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Projektbericht

Research Report

National Evaluation ReportNeo Socratic Dialogue: Spain

Increasing Public Involvement in Debates onEthical Questions of Xenotransplantation

David Santos, Emilio Muñoz, Gloria Ponce and Paolo Dordoni

Projektbericht

Research Report

Unidad de Políticas Comparadas, Madrid, CSICUniversidad Complutense de Madrid

National Evaluation ReportNeo Socratic Dialogue: Spain

Increasing Public Involvement in Debates onEthical Questions of Xenotransplantation

David Santos, Emilio Muñoz, Gloria Ponce and Paolo Dordoni

Report

Studie im Auftrag der Europäischen Kommission(Research Directorate General)

April 2004

Contact:

Emilio Munoz: +34/91/5219160email: [email protected]

The final report reflects the author’s views. The European Community is not liable for any use that may

be made of the information contained in this report.

Contents

1. Objectives 1

2. Methods 2

3. Input 33.1 Was it possible to enrol all relevant actors in the Neo Socratic Dialogue? .......................... 3

3.1.1. Composition and characteristics of the participants in the Spanish NSD................. 3

3.1.2. General points and scientific comments ................................................................... 6

3.2 What do participants think about XTP?................................................................................ 9

3.2.1 Connection with XTP ................................................................................................. 9

3.2.2 Level of information ................................................................................................... 9

3.2.3 Attitudes towards XTP ..............................................................................................10

3.2.4 Summary ..................................................................................................................15

3.3 What are their motivations, goals and expectations for the Neo Socratic Dialogue?..........17

3.3.1. Participants motivations...........................................................................................17

3.3.2 Expectations .............................................................................................................17

4. Process 214.1. and 4.2. Which issues and lines of arguments were debated during the Neo Socratic

Dialogue? ..................................................................................................................................21

4.2.1 Transfer from the dialogue to the XTP issue ............................................................40

4.3 Which coalitions as well as conflicts of interests did exist or develop?...............................46

4.4 Which problems did arise?..................................................................................................47

4.5 Was the process managed efficiently?................................................................................49

5. Output 535.1 Which results did the Neo Socratic Dialogue have? ...........................................................53

5.2 Was consensus reached? If not, why not?..........................................................................54

5.3. Was it possible to mark dissent?........................................................................................55

5.4. Was it possible to formulate policy options? ......................................................................55

5.6. Were their expectations/motives/goals fulfilled? ................................................................61

5.7. Was it possible to disseminate the results of the Neo Socratic Dialogue into a wider

discussion? ...............................................................................................................................70

5.8. In which way were the results of the Neo Socratic Dialogue brought in the

xenotransplantation debate?.....................................................................................................70

6. Impact 716.1. Which consequences do participants think that the Neo Socratic Dialogue will have for

their professional and private everyday life? ............................................................................ 71

6.2. Did the dialogue change their awareness of ethical problems of xenotransplantation?.... 71

6.3. Did the dialogue change their communicative patterns and capabilities in related ethical

questions? ................................................................................................................................ 72

7. Resonance 757.1. Did the Neo Socratic Dialogue have a resonance in the policy making process, scientific

community, media, public debate or industry? ......................................................................... 75

8. Summary and conclusion 768.1. Goal 1: To raise awareness of relevant actors and the public for ethical questions of XTP76

8.2. Goal 2: Discuss ethical problems of XTP .......................................................................... 78

8.3. Goal 3: Clarify the responsabilities of various actors for ethical questions of XTP ........... 81

8.4. Goal 4: To provide information to decision makers about the ethical basis and

consequences of XTP .............................................................................................................. 82

8.5. Consensual policy options for ethical problems of XTP .................................................... 83

8.6. To improve the communicative patterns and capabilities of actors in the field to cope with

ethical questions arising from modern science and technology ............................................... 84

Index of tables

Scheme 1: Participants 7

Table 1: Connection with XTP 9

Table 2: Information stand in XTP 10

Table 3: Overall attitude towards XTP 11

Table 4: Specific attitudes towards XTP 12

Table 5: Specific attitudes towards XTP 14

Table 6: Categories of expectations 18

Table 7: Expectations about the NSD 19

Table 8: Assessment of the facilitator’s interventions 49

Table 9: Assessment of the facilitator’s characteristics 50

Table 10: Assessment of the usefulness of the results of the NSD 53

Table 11: Assessment of the group’s activities 58

Table 12: Assessment of group characteristics 59

Table 13: Realization ox expectations 61

Table 14: Assessment of the outcomes of the NSD 62

Table 15: Comparison of expectations about and experiences with the NSD 65

Table 16: Relation between expectations about and experiences with NSD 66

Table 17: Relation between expectations about and experiences with NSD1 67

Table 18: Relation between expectations about and experiences with NSD2 68

Table 19: Assessment by school grades 69

Table 20: Willingness to recommend the NSD to colleagues 69

Table 21: Assessment of the usefulness of the NSD for the own work 71

National Evaluation Report Neo Socratic Dialogue: Spain — 1

1. Objectives

This work package is dedicated to the evaluation of the input, the process, the output and

the impact of the Neo Socratic Dialogue.

Its objectives are:

• To examine whether the Neo Socratic Dialogue reached its goals.

• To identify factors which furthered and/or hampered the accomplishment of these goals.

• To act as quality control measurement by providing structure to collect, “feed-back” and

analyse learning processes during the project (evaluator “as critical friend”).

• To provide the basis for recommendations, whether and how the Neo Socratic Dialogue

can be transferred to ethical debates on other technologies (tailored to target groups and

regions).

The expected result of this work package is to clarify whether the Neo Socratic Dialogue is

an appropriate instrument to discuss controversial ethical issues in science, medicine and

technology.

2 — National Evaluation Report Neo Socratic Dialogue: Spain

2. Methods

We used the following methodologies for the evaluation of the two Spanish NSDs1.

Analysis of records and documentation of the dialogue: We recorded the transfer phase of

the two NSDs. These transcripts provided the bases to report about the results about the

issue of xenotransplantation of the NSDs.

Ex-ante and follow-up questionnaires: For the ex-ante and ex-post survey we asked the

participants to fill in two questionnaires, one at the beginning and one at the end of the NSD.

All participants filled in these questionnaires, which means that altogether we have 38

questionnaires. In the first questionnaire we asked the group members about their motivation

to participate in the NSDs, their knowledge stand about XTP, their judgment about the ethical

issues of XTP and some statistical data. In the second questionnaire we asked them about

their experiences with and an assessment of the NSD.

Interviews with participants and the facilitator: We interviewed 18 of the 19 participants.

Despite several attempts we were unable to arrange interviews with one participant from the

first NSD. Interviews took place between August 29th and September 20th 2003; all of them

we did by telephone. The telephone interviews were recorded and we also took notes.

1 The evaluation team consisted of Emilio Muñoz and David Santos. Emilio Muñoz and David Santos were presentat the two NSD. Both dialogues were taped by a technical assistant. Paolo Dordoni was the facilitor andcollaborated in the Evaluation and Description of the NSDs. David Santos did the data processing of thequestionnaires and the interviews with participants and Gloria Ponce also collaborated with the interviews.


3. Input

3.1 Was it possible to enrol all relevant actors in the Neo SocraticDialogue?

The Baseline Evaluation carried out during the first part of XENO project served to show

clearly that there was a limited debate on xenotransplantation in Spain both by its extent and

scope. Those results provided additional empirical data to the reasons underlying the very

positive-almost unique case in the developed world-public opinion existing in Spain on

xenotransplantations applications.

All these clues had to be taken into account when proceeding to the selection of participants

in the Neosocratic Dialogues (NSD). After the long and lively debate hold during the “kick-off”

meeting of the project in Vienna (mid February 2002), it has been assumed by the Spanish

team that the selection of participants has to be based looking to a mix population which

must have some links on information on xenotransplants, but obviously possessing a varying

degree of connection to the topic. In sum, knowledge, information, interest, ethical and

normative representations on xenotransplantation, or at least, on bioethical issues were the

key words to create the pools of possible attendants. The invited persons were distributed

according to the representation provided in Scheme 1(see below)

3.1.1. Composition and characteristics of the participants in the Spanish NSD.

3.1.1.1 First NSD.

The first dialogue started with 10 participants for the introduction of the exercise. The

composition was as follows:

One of them (1st participant) was one of the Spanish researchers carrying out basic research

and experimental xenotransplants from pigs to babouins. This participant has been involved

in contracts with firms, and have been working in hospitals.

Another one (2nd participant), also tightly linked to the xenotransplants issue, was the head of

the transplantation unit of a quite relevant hospital from the Spanish National Health System.

Interestingly, this participant has been involved in the social analysis of xenotransplantation

perception among specialists and patients by carrying out a survey on this topic between the

health professionals and patients with kidney diseases. This person holds quite important

information on xenotransplatations’s possibilities, limits and drawbacks.


Third participant was a journalist, one of the most actively involved in the elaboration of

press information on the xenotransplantation issue. This journalist belongs to one of the

most relevant newspapers (rating third in terms of audience) and the documents published

on the topic were part of the content analysis performed during the Baseline Evaluation of

the project.

The fourth participant classifies as an expert in the juridical aspects of biotechnology, who is

collaborating with a well credited and specific chair on Human Genome and Law, located in

the Basque Country and supported by public and private institutions (a Bank Foundation, the

Regional Basque Government and the University of Deusto). The knowledge of this

participant on the normative aspects related to xenotransplants is high, but quite limited on

scientific and technical aspects.

The fifth participant holds a degree in Veterinary Sciences and has been involved in the few

initiatives existing in Spain on “Education Training” in biotechnology firms managements. At

the beginning of 2003, there were in Spain a few postgraduate courses addressing those

topics. The person invited has been involved in two of them.

The lay-interested people were represented by four participants, carrying out studies on the

acquisition of managerial skills for biotechnology companies. One out of the four (6th

participant), holds a degree in life sciences related disciplines but it is particularly interested

in the business aspects of biotechnology, socio-economic relation to policy makers and

consulting. A second one (7th participant) was a holder of a university degree on Law and is

interested in the normative aspects of biotechnology. The third one (8th participant) holding a

degree on Chemistry is particularly interested in the social aspects of biotechnology, their

evolution and development. The fourth and last one (9th participant), belonging to this group,

holds a degree on Chemistry and possesses previous working experience in the

pharmaceutical industry.

Two other participants invited were attending only part of the exercise. One of them is a

journalist, responsible for the institutional communication department from Spanish

Research Council (CSIC), who had to confront an institutional meeting and consequently

was able to attend only the introduction (first day) and one unit of the second day. The other

participant was a representative of the Socialist Party (PSOE) in the Spanish Parliament,

who has a strong commitment on scientific and technological issues. Unfortunately, political

commitments limited the participation to the introductory part of the NSD (evening of the first

day).

In sum, nine persons attended the whole event. But it is necessary to indicate that only eight

of them have responded to the ex-ante and ex-post questionnaires. All the data gathered in

the numerical analysis refers to 8 participants for the First Dialogue.


3.1.1.2 Second NSD.

Two participants (1st and 2nd participants) were presidents of the Spanish Transplanted

Patients Associations: one from kidney transplants and the other from heart transplants.

Both are extremely interested in xenotransplantation looking to it as a possible alternative to

allotransplants. They have been following debates on scientific, technical, and ethical issues

related to xenotransplantation and uncovered during the NSD the interests and worries of

patients.

The third participant is member of the previously mentioned chair on Human Genome and

Law, who has been involved in the ethical aspects surrounding the applications of

biotechnology applied to human beings and requiring the use of animals. A very significant

publication in Spanish on the juridical and ethical aspects of xenotransplants witnesses both

the qualifications and skills of this participant.

A fourth participant holds a degree in Law, being professor of Criminal Law in one of the

most important universities from Spain located in Madrid, and carries out great interest for

the socio-juridical aspects of biotechnology.

A fifth participant is researcher in biomedical sciences at CSIC, holds a degree in Medicine

and is specialist in cardiovascular diseases. This participant has been actively involved in

European research projects and hold responsibilities as Spanish representative in the Health

area of the Framework Programme; possesses quite significant information on the issue of

xenotransplantation ranging from technical to the ethical aspects.

The sixth participant holds a university degree in Law but possesses a hybrid culture as

having been involved in the obtention of a doctoral degree on the Human Genome topic

tackling both the scientific and juridical aspects, under a double direction for the preparation

of the doctoral dissertation: a molecular biologist and a law philosopher (natural law

specialist).

The seventh participant holds a university degree in Philosophy and is dealing in the

academic career in ethical aspects of biotechnology, having carried out participations in

national and foreign courses on Bioethics.

The eighth participant holds a degree on Pharmaceutical Sciences while being involved in

studies and analysis of public perception of biotechnology.

The ninth participant holds a university degree on Philosophy and was invited because

showing a great interest in the Neosocratic Dialogue by its possible application and

translation to the field of psychology. This participant was likely the one possessing the


lowest level of knowledge about biotechnology, though being aware of a general level of

information on the aspects of biotechnology which are at stake.

The tenth and eleventh participants were selected from people involved in a postgraduate

course on biotechnology. The first one of them holds a degree in Biological Sciences and is

increasingly interested in the promotion and production of biotechnological products through

private firms and public agencies, products being understood in a wide sense from education

to communication.

Lastly, the 11th participant holds a degree in Biology and is interested in the ethical aspects of

biotechnology.

As it has been illustrated the total number of participants in the second NSD was 11,

however, one of them (the 5th participant) had to leave during the middle of the second

session, though has been continuously interested in the follow-up of the exercise.

3.1.2. General points and scientific comments

The distribution of the participants according to their professional skills and interests is given

in Scheme 1.


One of the ethical problems raising controversies in the developed countries relies to the use

of animals as source of organs. Though this problem reaches limited scope in Spain, the

Spanish team considered of interest to invite the defenders of animal rights and contacts

were made with the three more representative associations. In spite of the efforts, none of

them attended, arguing problems of agenda (the three are university professors). This

explains their absence as depicted in Scheme 1. A similar situation did occur with

representatives of political parties. The number of political actors involved in scientific and

technical issues in Spain is rather low. Contacts with the two most representative and

publicly active, one from the conservative Popular Party and second from the left-center

Socialist Party (PSOE) resulted in the acceptance of the second one, though the resulting

participation was not significant. It can be concluded that political actors were not present in

the NSD in Spain.

In summary, the team participants in both NSD’s were between 24 and 59 years olds, the

mean was 36; 37% of them were under 30 and only 32% above 40. Eleven participants were

male and eight female. All of them were educated people though their involvement and level

PoliticiansDecision makers

(They did notparticipate in

NSDs)

Journalists(One participant)

No governmentalorganizations

Animal rights defenders(They did not participate in

NSDs)

Patients(Two participants)

People interested inBiotechnology (several

aspects: industry,consultancy, Law, Ethics,

public perception, training,public communication, etc.)

Fourteen participants

OthersOne participant

NSD1NSD2

Professionals(XTP Researchers,

Transplants doctors, etc.)

(Three participants)


of knowledge on biotechnology varied. The Spanish team intention was to hold the NSD’s

with a mixed population of participants in terms of information on the topic subject of the

NSD, but with the organizers possessing a profound knowledge on the biographies and

value recognition of each one of them. The direction would favor an in-depth qualitative

analysis of the outcomes of the evaluation what is in agreement with the main strengths

evolved by the Spanish team along its research agenda during the last decade. This may

help to overcome the statistical limitations of the exercise by the low samples involved and

the possible biases in the selection.

From the information gathered, it may be anticipated that the participants in the 1st NSD

would have a blend position with respect to connection to the xenotransplantation issue but

feeling a lower attraction by the method (this first group characterized by a “positivist

position”), whereas the participants in the 2nd NSD would be characterized by showing a

higher attractiveness for the value issues and for the methodology of the dialogue (it could

be named as a group with “moral valuing position”).

The summing up of the main differences between the two groups is as follows. As shown in

Table 1, the members of NSD 2 reveal a tighter relationship with xenotransplantation than in

NSD 1 group. The predominance of juridical educated people in this first group with limited

knowledge counteracts the presence of two highly qualified technical experts in this group,

whereas the average technical expertise is higher in the second group even for those

holding a primary education on juridical topics. The same argument must apply to the

explanation of the high level of information on xenotransplants observed for the NSD 2 group

(see table 2).

With regard to the question on general attitudes about xenotransplantation, no marked

differences were observed for both groups. Among the positive attitudes the questions “XTP

could reduce the bases for organ trade” and “There is fundamental difference between the

case of animals as nutrition and organ uses” collected more support from the participants in

the first NSD.

The reverse is found with the items “There are no less problematic alternatives within

foreseeable future” and “Physicians obligation to cure individual patients is more important

than a potential risk for the population” which are counting on greater support among the

participants in the second NSD.

Regarding the negative attitudes, there are some important differences between the two

NSD. Scientifically based items like the breeding and use of source animals contradicts

criteria of breeding according to species “XTP crosses the species border between humans

and animals” and “Genetic engineering of source animals is necessary to use their organs

for humans” received more support from the members of NSD 1 group. On the other hand,

value based items like “ It cannot be excluded that pathogens from the donor animal are


transmitted to the patient and, in the worst case, spread in the population” and “XTP patients

could have psychological problems because of having an animal organ” did get more

support from the second NSD group.

In the remaining items, there were no significant differences.

In broad terms, and taking into account the limits of our analysis, the differences between the

two NSD groups can be explained by the contrast between “positivism” (first group) and

“moral valuing” (second group).

3.2 What do participants think about XTP?

3.2.1 Connection with XTP

An important percentage of participants (53%) declared in the surveys their strong or

medium professional or personal links to xenotransplantation issues. The remaining 47%

state a weak or non-existent relationship with the topic. This even distribution does not

permit to draw clear conclusions on this issue.

From Table 1, it can be seen that the connection with xenotransplantation was slightly higher

for the second NSD (compare mean values. It is worth to remind that 1, 2, 3, 4 values stand

for “Strong”, “Medium”, “Minor” and “None”, respectively).

Table 1: Connection with XTP

Str

ong

Med

ium

Min

or

Non

e

Mea

n

Std

.

Dev

iatio

n

How strong is the relationshipbetween you professionaland/or voluntary tasks and theissue XTP?

4

(2/2)

6

(1/5)

7

(4/3)

2

(1/1)

2,37

(2,50/2,27)

0,96

(1,07/0,90)

(Source: CSIC-Survey 2003)

3.2.2 Level of information

Information of the NSD participants emerges as a factor which may influence the outcomes

of the dialogues. To test this influence, a question was included in the questionnaire

submitted to participants previously to the development of the dialogue.


The results are presented in Table 2. More than half of the participants declared to be full or

fairly informed on the xenotransplantation issue. No one answered as “Not informed”, a

result which guaranteed a basal level of information to the topic of the dialogue. The

participants in the second NSD show better results at this respect, mean value of 2,00 as

compared to 2,38 for the first dialogue. The participants in the second dialogue then

averaged as “Fairly informed”. This result matches well with the previous result on the

degree of connection with xenotransplantation.

Table 2: Information stand in XTP

Ful

ly

info

rmed

Fai

rly

info

rmed

Littl

e

info

rmed

Not

info

rmed

Mea

n

Std

.

devi

atio

n

How do you estimate yourinformation stand about XTP?

6

(2/4)

4

(1/3)

9

(5/4)

2,16

(2,38/2,00)

0,9

(0,92/0,89)


3.2.3 Attitudes towards XTP

The participants were questioned on their general opinion on xenotransplantation by asking

the agreement degree on the following statement: “In broad terms, I consider

xenotransplantation as a positive medical application for the future”.

Taking together both dialogues, an overwhelming majority (84%) expressed their agreement

(responses “Agree very much” and “Rather agree”). Results are shown in the Table 3. Only

two participants (second NSD) declared “Rather do not agree” and a single participant

identified him/her self as “undecided”.

Results are very similar for each one of the dialogues taken separately, though the positive

attitude was slightly higher for the first NSD. In any case, the positive attitude towards

xenotransplantation as a medical technology overpassed 75% or participants (see Table 3).


Table 3: Overall attitude towards XTP

I agr

ee v

ery

muc

h

I rat

her

agre

e

I rat

her

don’

t

agre

e

I don

’t ag

ree

I am

unde

cide

d

Mea

n

Std

.

devi

atio

n

To what extent do youagree with the followingstatement about XTP.Altogether I consider XTPa desirable futuretreatment.

4

(3/1)

12

(7/5)

2

(0/2)

0

(0/0)

1

(1/0)

2,05

(2,00/2,13)

0,91

(1,10/1,64)


To go in depth in the knowledge on the attitudes towards xenotransplants, all participants

were asked about their respective degree of agreement on 16 statements, six of them being

positive and 10 expressing negative positions. The results are shown in the Tables 4 and 5.

Around 80% of the participants expressed their positive opinion about xenotransplantation as

a solution to overcome the problem of organ shortage. No significant differences were found

between the two dialogues.

A clear majority of the participants (74%) gave a positive support to the issue that

xenotransplants can be an efficient solution to improve the patients quality of life. Again,

there were no significant differences at this respect between the participants in the two

dialogues.

A minor proportion (only 58%) expressed a positive opinion regarding the eventual reduction

of organ trade. In this issue, there are marked differences between the two groups. The

participants in the first NSD gave an average of 2,00, equal to the “Rather agree” level while

the participants in the second dialogue got a 2,82 as average, a figure that is near to the

“Rather do not agree” level. The participants in the second NSD, precisely those having

shown a higher degree of information and knowledge about xenotransplantation, were more

sceptical about this crucial issue. The contraposition between the “positivist” and the “moral

valuing” positions may explain this difference.

A similar proportion, 58%, expressed their agreement with the argument that the use of

animals as a source of organs is similar to their use for food. Again, as in the previous case,

the matching between the two groups is very uneven. The mean for the first dialogue

participants amounts to 2,25, a value near to the level “Rather agree”, but the mean for the

second group of participants is 2,73, a value closer to the “Do not agree” level. The

participants in the second dialogue were prone to consider that the two types of cases are

different in terms of acceptability and feasibility. A similar argument to that expressed above

could take account of the different score.


A little more than half of the participants expressed the view that xenotransplants are a

valuable alternative because there are no less problematic alternatives within foreseeable

future. There are not significant differences between the two groups, though the participants

in the second dialogue show a certain positive bias towards the issue (they gave results

closer to the “Rather agree” level).

Last, but not least, the great majority of the participants, 80%, do not support the statement

that “the election is to cure or solve the problems of individuals without taking care of the

risks of infection for all the population”. The members participating in the first NSD were

more critical about this issue, as all of them chose the option “Do not agree”. Though we

have to admit that the interpretation is not a straight one, we would like to argue on the

predominance of a “positivist”, professional position as to explain this result.

Table 4: Specific attitudes towards XTP

I consider XTP asdesirable from an ethicalperspective because....

I agr

ee v

ery

muc

h

I rat

her

agre

e

agre

e

I don

’t ag

ree

I am

und

ecid

ed

Mea

n

Std

. dev

iatio

n

1. XTP can solve theexisting shortage ofhuman organs

5(1/4)

10(5/5)

3(2/1)

0(0/0)

1(0/1)

2,05(2,13/2,00)

0,97(0,64/1,18)

2. XTP could savehuman lives andcould improvepatients quality of life

4(1/3)

10(4/6)

3(3/0)

0(0/0)

2(0/2)

2,26(2,25/2,27)

1,15(0,71/1,42)

3. XTP could reducethe bases for organtrade

2(1/1)

9(6/3)

6(1/5)

1(0/1)

1(0/1)

2,47(2,00/2,82)

0,96(0,53/1,08)

4. There is nofundamentaldifference betweenthe use of animals asnutrition and organdonors

4(1/3)

7(5/2)

4(1/3)

2(1/1)

2(0/2)

2,53(2,25/2,73)

1,26(0,89/1,49)

5. There are no lessproblematicalternatives withinforeseeable future

1(0/1)

10(5/5)

5(0/5)

2(2/0)

1(1/0)

2,58(2,88/2,36)

0,96(1,25/0,67)

6. Physicians’obligation to cureindividual patients ismore important thana potential infectionrisk for thepopulation

1(0/1)

0(0/0)

5(0/5)

12(8/4)

1(0/1)

3,63(4,00/3,36)

0,83(0,00/1,03)

(Source: IHS-Survey 2003)


We move now to the results obtained from the participants’ reaction to the statements

containing negative messages (see Table 5).

There is an important decision between the participants on the possibility that the

xenotransplants may cause infections to the patient and to all population.

A 32% chose the option “Rather agree” and 42% chose the option “Rather do not agree”. A

forth part of the participants were “undecided”.

A similar situation was found for the question related to the possible reduction of human

donors if the xenotransplants initiative evolved positively. The 42% of participants gave

support to this argument, while the 57% opposed to it. It is clear from this that there is no a

situation of unanimity.

On the other side, there is a majority about the question of the need of restriction of

fundamental rights in the patients by monitoring them to ensure safety. 84% opposed to this

restriction.

The remaining questions obtained a great variety of results. A 57% of the participants did not

agree with the statement that the xenotransplanted patients will suffer psychological

problems. This value rises slightly to 63% for the first group (“positivism slightly dominating”).

There was not, among the participants in the NSD, a strong position for defending the animal

rights. A 68% of the participants disagreed with the statement that the “use of animals” for

this use contradicts normal breeding criteria and rules.

More that half of the participants gave opinion against the argument that the use of animal

organs implies the crosses of species barriers. It is important in relation to this item, the high

level of participants (21%) choosing the option “undecided”. This specialized question

requires a good proficiency on science aspects.

The question number seven underlying the need to use genetic engineering for making

better the use of animals as donors got a very asymmetric result. The mean for the first

group amounts to 1,88, a value close to the option “Rather agree”. The mean for the second

group is 3,27, a value overpassing the option “Do not agree”. However, the strong

quantitative discrepancy is due to the fact that two participants in the second dialogue chose

the option “Undecided” whose numerical value is 5, thus provoking a non-well substantiated

increase in the average.

A great majority (84%) opposed to the argument that the research in xenotransplants will

divert funds towards high-tech medicine, thus jeopardizing basic, primary healthcare. Still a


higher percentage (94%) did not agree with the argument that by using animals as organ

donors, they are transformed into spare parts for human benefit.

63% of the participants expressed opinion against the argument that xenotransplants will

reduce the funding for primary healthcare in the countries of the Third World. It seems to be

clear that the lack of resources to this goal in the less developed countries is not a

consequence of the research effort in the developed countries, but that it relies on more

complex causes.

Table 5: Specific attitudes towards XTP

I consider XTP from

an ethical

perspective as not

desirable because…

I agr

ee v

ery

muc

h

I rat

her

agre

e

I rat

her

don’

t agr

ee

I don

’t ag

ree

I am

und

ecid

ed

Mea

n

Std

. Dev

iatio

n

1. It cannot beexcluded, thatpathogens fromthe donoranimal aretransmitted tothe patient and,in the worstcase, spread inthe population.

1(0/1)

6(3/3)

8(2/6)

0(0/0)

4(3/1)

3,00(3,38/2,73)

1,20(1,41/1,01)

2. XTP couldfurther decreasethe willingnessin the populationto donatehuman organs

2(1/1)

6(2/4)

7(4/3)

4(1/3)

2,68(2,63/2,73)

0,95(0,92/1,01)

3. It might benecessary toconstrictfundamentalliberty rights(e.g. byquarantine) tominimize therisk oftransmission ofpathogens fromdonor animals topatients and thepopulation.

0(0/0)

3(1/2)

8(3/5)

8(4/4)

3,26(3,38/3,18)

0,73(0,74/0,75)

4. XTP patientscould havepsychologicalproblemsbecause ofhaving ananimal organ.

1(1/0)

6(1/5)

9(4/5)

2(1/1)

1(1/0)

2,79(3,00/2,64)

0,92(1,20/0,67)


I consider XTP from

an ethical

perspective as not

desirable because…

I agr

ee v

ery

muc

h

I rat

her

agre

e

I rat

her

don’

t agr

ee

I don

’t ag

ree

I am

und

ecid

ed

Mea

n

Std

. Dev

iatio

n

5. The breedingand use ofsource animalscontradictscriteria ofbreedingaccording tospecies.

1(0/1)

2(2/0)

9(4/5)

4(1/3)

3(1/2)

3,32(3,13/3,45)

1,06(0,99/1,13)

6. XTP crosses thespecies borderbetweenhumans andanimals.

0(0/0)

5(4/1)

1(0/1)

9(4/5)

4(0/4)

3,63(3,00/4,09)

1,12(1,07/0,94)

7. Geneticengineering ofsource animalsis necessary touse their organsfor humans

4(3/1)

6(3/3)

3(2/1)

4(0/4)

2(0/2)

2,68(1,88/3,27)

1,34(0,83/1,35)

8. XTP will tiefunds in high-tech medicine,which could bemissing inprimary healthcare

1(0/1)

1(1/0)

10(6/4)

6(0/6)

1(1/0)

3,26(3,13/3,36)

0,87(0,83/0,92)

9. XTP reducesanimals to organdonors.

0(0/0)

1(0/1)

8(5/3)

10(3/7)

3,47(3,38/3,55)

0,61(0,52/0,69)

10. XTP will tie upfunds indevelopedcountries, whichmight be missedfor primaryhealth care in 3rd

world countries.

1(0/1)

4(2/2)

8(3/5)

4(2/2)

2(1/1)

3,11(3,25/3,00)

1,05(1,04/1,10)


3.2.4 Summary

The participants in the two Spanish NSDs were credited with different skills and interests:

researchers involved in xenotransplantation, representatives of transplant patients,

journalists, bioethicits, students on Bioethics, scientists. Half of them declared to have a

professional or personal link (”Strong” or “Medium”) with the issue of xenotransplantation.

The same percentage stated to possess a high or very high level of information on

xenotransplants. Nobody considered to be a lay person on the topic.


The possible solution to organ donor shortage was the most supported positive argument for

the use of xenotransplants. The improvement in the quality of life of patients needing a

transplant was the second in the positive scale of values. The last and less appreciated

argument was the one pointing out to the obligation of health professionals to cure the

patients, independently of the risks that could involve the general public.

The participants expressed disagreement with the negative arguments on xenotransplants.

The only one receiving some supports refers to the fact that xenotransplants may reduce the

number of human donors.

It can be said that, a great majority of the Spanish participants in both NSD exercises hold

positions in support of xenotransplantation. Only one declared as undecided and no one was

against the medical technology.

The summing up of the main differences between the two groups is as follows. As shown in

Table 1, the members of NSD2 reveal a tighter relationship with xenotransplantation than in

group NSD1. The predominance of juridical educated in this first group with limited

knowledge counteracts the presence of two highly qualified technical experts in this group,

whereas the average technical expertise is higher in the second group even for those

holding a primary education on juridical topics. This same argument must apply to the

explanation of the high level of information on xenotransplantation observed for the NSD2

group (see Table 2).

With regard to the question on general attitudes about xenotransplantation, no marked

differences were observed for both groups. Among the positive attitudes, the questions “XTP

could reduce the bases for organ trade” and “There is no fundamental difference between

the case of animals as nutrition and organ uses” collected more support from the participants

in the first NSD. The reverse is found with the items “There are no less problematic

alternatives within foreseeable future” and “Physicians’ obligation to cure individual patients

is more important than a potential infection risk for the population”, which are counting on

greater support among the participants in the second NSD.

Regarding the negative attitudes, there are some important differences between the two

NSD. Scientifically based items like “The breeding and use of source animals contradicts

criteria of breeding according to species”, “XTP crosses the species border between humans

and animals” and “Genetic engineering of source animals is necessary to use their organs

for humans” received more support from the members of the NSD1 group. On the other

hand, value based items like “It cannot be excluded, that pathogens from the donor animal

are transmitted to the patient and, in the worst case, spread in the population” and “XTP

patients could have psychological problems because of having an animal organ” did get

more support from the second NSD group. In the remaining items there were no significant

differences.


In broad terms, and taking into account the limits of our analysis, the differences between the

two groups can be amounted for by the contrast between “positivism” (first group) and “moral

valuing” (second group).

3.3 What are their motivations, goals and expectations for the NeoSocratic Dialogue?

3.3.1. Participants motivations

According to the ex-ante questionnaire of the first dialogue, most of the participants attended

the meeting due to two motivations: because of their interest in xenotransplantation as a

result of the biotechnology and because of their interest in the methodology of the Neo

Socratic dialogue. These are the two main answers to the open questions about

expectations.

Some examples of these opinions about expectations are, extracted from the ex-ante

questionnaires:

• NSD1-1: “Es un tema de mi interés y una línea de investigación de mi grupo” (professional interest).

• NSD1-3: “Interés por un tema de biotecnología con fuertes implicaciones éticas y emocionales en el conjunto

de la sociedad actual” (professional and ethical implications).

• NSD1-4: “Aprender a escuchar y adquirir información sobre los avances científicos en el campo de los

xenotrasplantes” (to learn about the topic).

• NSD1-8:”Conocer la actitud de personas procedentes de distintos ámbitos sobre el xenotrasplante, que

constituye mi trabajo cotidiano” (to know other views).

• NSD2-2: “La preocupación por la materia, así como la posibilidad de intercambiar conocimientos y aportar

ideas en la discusión” (interest for the topic and for exchanging views).

• NSD2-4: “Conocer el método para la toma de decisiones y obtención de conocimiento” (to know the method).

• NSD2-7: “La posibilidad de participar en la construcción de unas bases éticas en un tema científico, además

de conocer un método totalmente desconocido” (to know the method and building ehtics).

• NSD2-9: “La implicación directa en el tema como alternativa terapéutica de garantía para la mejora de la

calidad de vida de los pacientes afectados. La curiosidad por conocer con más profundidad sus pros y

contras” (to explore the therapeutic alternatives).

3.3.2 Expectations

The Austrian group, as leaders of the Project, has proposed 22 statements to be addressed

to the participants for their assessment using a range from 1 to 5. The statements have been


grouped into four categories: “Topic of XTP”, “Method of NSD”, “Qualities of the dialogue”,

“Personal rewards from the dialogue” as shown in Table 6.

Table 6: Categories of expectations

Interest in the topic from other participants

New insights into the ethics of XTP

New information about XTP

A clear answer, how to deal with the problem XTP

To reach at a consensus concerning XTP

Topic of XTP

To change my position towards XTP

To learn to know the NSDMethod of the NSD

To get to know a different form of discussion

A clearly structured discussion

An exciting discussion with regards to content

To have a high level conversation

A dialogue equal to all participants

An open atmosphere

Tolerance to my opinion

That other participants listen to me and try to understand

Qualities of the dialogue

That other participants refer to my arguments

To learn to know other people and their standpoint

To develop my communicative skills

To better understand other participants’ position

To convince others with my point of view

Time to think about an ethical problem

Personal rewards from the dialogue

To clarify my own standpoint

The results are shown in Table 7, in a numerical scale from 1 to 5 corresponding to a

qualitative range from “Very much expectation” to “No expectation”. The issue receiving the

most high expectation was “To get to know a different form of discussion”, followed by “An

exciting discussion with regards to the content”, “To better understand other participants’

position”, “A dialogue equal to all participants” and “To learn to know the NSD”.

These five expectations with the highest scores are counterbalanced by other five the least

positive rating such as: “That other participants refer to my arguments”, “To convince others


with my point of view”, “To change my position towards xenotransplantation”, “That other

participants listen to me and try to understand” and “Time to think about an ethical problem”.

It can be seen that the methodological categories: “Method of the NSD” and “Qualities of the

dialogue” are those receiving the highest appraisal from the participants. The most specific

issue related to the case selected, xenotransplantation, seemed to raise the lowest

expectations among the participants.

Table 7: Expectations about the NSD

Personally I am expecting…

high

expe

ctat

ion

2 3 4

5 =

no

expe

ctat

ion

Mea

n

Std

.D

evia

tion

1. Interest in the topic also from otherparticipants

72/5

84/4

42/2

1,84(2,00/1,73)

0,76(0,76/0,79)

2. An exciting discussion with regards tocontent

125/7

62/4

11/0

1,42(1,50/1,36)

0,61(0,76/0,50)

3. To get to know a different form ofdiscussion

157/8

31/2

10/1

1,26(1,13/1,36)

0,56(0,35/0,67)

4. To learn to know other people and theirstandpoint

94/5

104/6

1,53(1,50/1,55)

0,51(0,53/0,52)

5. A dialogue equal to all participants113/8

74/3

11/0

1,47(1,75/1,27)

0,61(0,71/0,47)

6. An open atmosphere103/7

84/4

11/0

1,53(1,75/1,36)

0,61(0,71/0,50)

7. New insights into the ethics of XTP103/7

75/2

20/2

1,58(1,63/1,55)

0,69(0,52/0,82)

8. To learn to know the NSD114/7

73/4

11/0

1,47(1,63/1,36)

0,61(0,74/0,50)

9. A clearly structured discussion6

1/58

6/24

1/31

1/02,05

(2,25/1,91)1,03

(1,16/0,94)

10. To have a high level conversation4

1/3105/5

41/3

11/0

2,11(2,25/2,00)

0,81(0,89/0,77)

11. To better understand other participants’position

134/9

43/1

21/1

1,42(1,71/1,27)

0,69(0,488/0,65)

12. Time to think about an ethical problem9

4/57

3/42

1/11

0/12,74

(2,63/2,82)0,87

(0,74/0,98)

13. To develop my communicative skills3

1/28

4/44

2/24

1/32,47

(2,38/2,55)1,02

(0,92/1,13)

14. New information about XTP4

2/27

4/32

1/15

1/41

0/12,58

(2,13/2,91)1,26

(0,99/1,38)

15. Tolerance to my opinion2

0/2126/6

52/3

2,16(2,25/2,09)

0,60(0,46/0,70)

16. That other participants refer to myarguments

21/1

62/4

83/5

32/1

3,63(3,75/3,55)

0,90(1,04/0,82)

17. To clarify my own standpoint5

2/38

3/51

0/14

3/11

0/12,37

(2,50/2,27)1,26

(1,31/1,27)

18. That other participants listen to me and tryto understand

11/0

42/2

114/7

20/2

11/0

2,89(2,75/3,00)

0,88(1,16/0,63)


Personally I am expecting…

1 =

ver

yhi

ghex

pect

atio

n

2 3 4

5 =

no

expe

ctat

ion

Mea

n

Std

.D

e via

tion

to understand 1/0 2/2 4/7 0/2 1/0 (2,75/3,00) (1,16/0,63)

19. To reach at a consensus concerning XTP3

0/36

3/37

5/22

0/21

0/12,58

(2,63/2,55)1,07

(0,52/1,37)

20. To change my position towards XTP4

2/2114/7

32/1

10/1

3,05(3,00/3,09)

0,78(0,76/0,83)

21. A clear answer, how to deal with theproblem XTP

136/7

51/4

11/0

2,37(2,38/2,36)

0,60(0,74/0,50)

22. To convince others with my point of view1

1/02

1/16

2/45

1/45

3/23,58

(3,50/3,64)1,17

(1,51/0,92)


The item “A dialogue equal to all participants” received a higher appraisal as an expectation

from the second dialogue group. The members of the second group also gave better

assessment to the item “An open atmosphere”, “A clearly structured discussion” and “To

better understand other participants’ position”. Those differences in the appraisal maybe a

reflection of the group composition and consequently of the fluid dynamics experienced

during the second dialogue as compared to the first one.

On the other hand, the expectation “New information about XTP” received more support from

the members of the first dialogue. This may result from the combination of more professional

attitude shown by this group together with the presence of a higher proportion in it of less

informed people. This could result in a positive outcome about the gain of information and

“knowledge” about the topic.

Two persons who work in the xenotransplantation field attended the first dialogue. They are

considered two of the most relevant researchers in this field in Spain. Their main

expectations were to get more information about the opinion of the audience about

xenotransplantation.

In the second dialogue, the two main motivations registered in the ex-ante questionnaire

were: to get more information about xenotransplantation and the ethical implications; to learn

about the methodology of the Neo Socratic dialogue and its possible applications to other

kinds of decisions in science and technology.

Two representatives of patient associations attended the second dialogue. Their relation with

the issue of allotransplantation and xenotransplantation was very strong, because they both

had received an organ some years ago. One expert in ethical questions of xenotrans-

plantation also attended the meeting. The rest of participants did not have a very strong link

with xenotransplantation.


4. Process

The first dialogue was held on 27th and 28th January 2003, and the second dialogue was

held on 3rd and 4th February 2003. In both cases, the meetings took place from 6pm until

10pm during the first day, and from 10am until 6pm during the second day, approximately.

Each event lasted 12 hours in total, including lunch, dinner and coffee breaks.

The minimum audience of the two dialogues was eight participants, although there were

some cancellations a few days before the meetings. The ratio of attendance was above

75%, higher than expected.

Both dialogues were held in the CSIC Head Office in Madrid. We chose one big room, with

high capacity. This place was chosen in order to get a comfortable space for the participants.

Care was also taken about all details which could influence the right course of the dialogues.

All participants had to stay for more than 12 hours altogether sessions inside the room, and

this is because a pleasant atmosphere was required.

It was held a dinner for the first session and a lunch for the second session. We thought that

these acts could create a relaxed atmosphere within the participants. Almost all of them did

not meet before, and during dinner, lunch and breaks they could have friendly conversations.

This is particularly important in order to get a suitable atmosphere, that may promote a more

fluent dialogue between those attendants2.

4.1. and 4.2. Which issues and lines of arguments were debated duringthe Neo Socratic Dialogue?

The description of the process is based on the report prepared by the facilitator. The

evaluation team includes it in the report as a frame of reference for the dynamics of the

exercise but it is not considered as a part of the evaluation exercise.

In the following description, participants are identified as according to the characterisation

given in section 3.1.

2 Extracted from the Deliverable 5.


First Dialogue

Theme: Which risks to take?

Question: Which risks should we undertake?

First session

Towards the example

Examples:

• The first example was provided by participant seventh (the second among those

classified in section 3.1 as lay persons). This participant did not answer the

questionnaires: To buy a motorbike (The risk depends on the driver's action as well on

the other drivers- unpredictability)

• Second example was provided by the third participant: To drive the car with the risk to be

heavy with sleep (risk for myself and for other persons). To have or not to have a son

accepting the risk he or she can have cystic fibrosis (risk for the child, for the family)

• Third example was given by participant 6 (the first one among the lay interested people):

To take a risk decision in a dangerous situation lived in the mountain with a group of

friends: to descend with the sky looking from a surer place. (risk for the life, risk in the

sense of uncertainty of alternative)

• The fourth was raised by participant 4: To go to Madrid by bus in bad weather condition

(snow) (risk not to arrive and achieve our own goals)

• The fifth example was given by the second participant: To decide to make a transplant to

a Jehovah-witness (risk for the life of another man, risk for the stability of the clinical-

team). To be in a plane in which there was a problem with the landing gear (risk for his

life).

• The sixth example was proposed by the fifth participant: To take the responsibility to

manage by oneself an unexpected problem with an important client in a firm. (risk to fail

and to compromise the future of the profession)

• The seventh case was proposed by the ninth participant (the fourth among the lay

interested people): To undergo an operation with relevant side effects suspecting to

suffer a grave illness. (risk in the diagnosis, risk in the therapeutic process surgical

treatment)

The participants chose the example of “driving the car” by a great majority, after a long

process of argumentation. The only participant who disagreed about this choice declared

that even if that example wasn't the favourite one, it wouldn't be a problem at all to work with

it.


Arguments in favour of the example accepted by the group:

• It concerns a collective risk. It could be helpful to transfer the results to XTP problems.

• It is closest to the criteria for a suitable example (easy, comprehensible, diary, it is

possible to put oneself in the shoes of the example's giver)

• In the course of the election of the example a question emerged that was in other

occasion present in the dialogue: What is a risk?

The process of choosing the example

Arguments of some of the participants: personal preferences:

• Participant 7th: “All this examples concern risks in which we have taken a personal

decision, except that of the plane. It would be better to choose an example in which we

have had a decision. Preferences for the example of transplantation. We take a decision

that influences the team, the patient and us. Context nearer to XTP”.

• Example’s giver supported the own example: "To drive the car with the risk to be heavy

with sleep" because of the implication of other persons. This participant supported also

the example of transplantation.

• Participant 9th: supported the example of transplantation for its proximity to problems

related with ethics (personal decision, team decision, patient decision)

• Participant 2nd: chose the example of buying a motorbike because of its proximity to his

own life experience

• Participant 4th: supported the example of transplantation for the possible presence of a

judicial authorization.

• Participant 1st: supported the example because the collective risk in it implied has a

major connection with the XTP (individual benefit versus collective risk) even if in the

case of XTP it isn’t clear if we have a benefit at all.

• Participant 8th: chose the example of driving the car for the collective risk and she

supported also as second preference the example of buying the motorbike.

At the moment the preferences were so distributed:

• Motorbike: 2 votes

• Car: 3 votes

• Transplants: 4 votes

The facilitator suggested before having a vote to take into account the criteria of a suitable

example as well as the arguments exposed by the others. Would you like to change the


preference taking into account what we have learnt? Here there are some changes or new

preferences.

• Participant 6: It is better the example of the mountain because there is a process of

taking a decision in difficult situation of two alternatives. We don’t know in XTP what kind

of the decision is better. We know only that we cannot remain in that situation.

• Participant 2: There isn’t a perfect example. There are more suitable examples.

• Participant 9: decided to support the example of driving the car and to change her

precedent election.

In a final decision process all expressed their preferences: the results were 8 preferences for

the example of driving the car. Arguments in favour of the example accepted by the group:

• It concerns with a collective risk. It could be helpful to transfer the results to XTP

problems.

• It is as closest as ideal to the criteria for a suitable example (easy, comprehensible,

diary, it is possible to put oneself in the shoes of the example's giver)


Second session

The example was clarified by example’s giver and by the participants:

Towards the judgment

Should you undertake the risk in that situation? The example’s giver answered not having

asked such a question. The example giver acted more instinctively.

Context:

The participant who proposed the example said: “Since I have had my second son (two years ago), Ihave had problem by sleeping. I couldn't sleep all the time I needed, because of the young child. Twodays before the action I made, I knew I should go to a funeral of a colleague in Zamora (a city 300 kmfar away from my home) with a car that wasn't mine and that has recently been in a garage”.

Situation:

The participant who proposed the example said: “When I started, I was in a hurry because I shouldarrive at 9.00am in Zamora. There were other two persons with me, but they weren't able to drive. I feltemotionally bad, and I was tired. Nevertheless, at the moment of taking the decision, (that I shared withmy friends) I thought to be well, as often we believe in such circumstances. During the travel (that Ihaven't made before) I haven't had the experience of a specific moment in which I realised the risk wastoo high, as for instance, the sensation to fall slept or similar. I had fear about it but I had alsoconfidence in myself. The friends were talking to me during the travel and I didn’t make any stop in it”.

Problem:

To arrive in time for the funeral

Interest:

To k e e p a n e m o t i o n a l r e l a t i o n s h i p w i t h t h e f a m i l yTo accomplish a moral obligation

Risk:

To have an accident because of not having slept well

Benefit:

To keep proximity with the family

The affected by the action:

The driver, two friends of the example’s giver, the other person on the road.

Action:

Driving for 300 Km in bad conditions, not being able to keep all the attention required by driving.Example’s giver said: “I would act in the same way, because I haven’t had problem”.

Alternatives of action:

To l o o k f o r o t h e r p e r s o n a b l e t o d r i v eTo m a k e a r e s t d u r i n g t h e t r a v e lTo inform oneself about the street before to leave


Judgment

“The risk was to undertake, because there were the possibilities to control it, to come back

(in the sense to have some alternative at disposal)”

In this part some participants expressed dissent on the action taken by the example’s giver:

• Participant 4: It was an imprudent decision,

• Participant 1: The driver wasn’t aware of the risk and acted without having a conscience

of the risk

• Participant 2: The example giver was compelled by a sense of moral obligation

Reformulation of the judgment

Example’s giver said: “The risk was to undertake, because there was a moral obligation”.

In this part of the dialogue, the participants, instead of moving towards different form of

argumentation, worked empathically with the example. They agree that the risk was to

undertake because the example’s giver has had a moral obligation. The reasons to this

attitude were different.

The facilitator suggested some of them:

• Perhaps it has played a role to have suggested to detect the emotions the example

suggested. This has in part delayed a critical attitude as well the possibility to have a

dissent, as in the first part emerged in the group.

• The example’s giver expressed also difficulties: as having felt under pressure, by the

group when they expressed critical approaches.

• Problems of language: what does it mean “should” in Spanish? What does it mean “to

undertake a risk” in Spanish. "Should" was seen or as a necessary, factual condition,

instead of an exigency of an ethical justification, or as the expression of a singular moral

conscience. "Undertake" was interpreted as something in which there was a personal

moral involvement

One of the leaders in the group (the XTP researcher, participant 1) moved towards a

theoretical clarification. The participants worked specifying the factual aspect could justify

this proposition. The judgment was in the following way specified by the participants: “Yes,

the risk was to undertake, because there was a moral obligation”, under the condition of:

• not to have had a negative personal experience in the past (if a person hasn't had a

personal experience in which he/she had lived this peculiar risk or an analogous one,

he/she usually acts as if he/she would be able to face this situation)


• it didn’t' happen anything

• the risk was measurable

During the phase of discussion of the judgment and in the process of the justification was

presented some general themes did arise:

• The role that in the perception of a risk plays to have had a precedent experience.

• The role that can play the fact to being conscious or not of the risk and the factors that

influence this consciousness.

• The way of evaluating a risk, what kind of criteria do we have to evaluate a risk, to

graduate a risk, to quantify it? Are those criteria only individual, social, cultural and

relative?.

• The general question: what is a risk?

Third session

Moving from theoretical consideration to ethical consideration

Intervention of the moderator:

• Clarification of the utilization of the words and of the direction of our general questions in

order not to conduct the dialogue only towards a theoretical and empathic direction.

• Clarification of the differences between different kinds of justification: An action/decision

can be justified from a theoretical point of view (we improve our knowledge of it if we

detect the reasons, the causes and motivations that have played a role in that situation)

• An action/decision can also be justified in the sense that it is ethical correct, if there are

argument that make it ethical acceptable.

• In other words, the question wasn't why the example’s giver had acted in such a way, but

whether the arguments of the example’s giver to justify the decision were also ethically

relevant.

The facilitator provoked the group asking the following questions:

• Is to have a moral obligation an ethical criteria to undertake a risk?

• Is not to have an experience in a risk situation an ethical criteria to justify to undertake a

risk?

• Is the fact that we haven't measured a risk an ethical criteria to justify it?

The participants moved themselves from a dialogue of theoretical consideration to a

dialogue of ethical issues.


The group worked before in a general way underlying some aspects we have to take into

account to answer to our general question: which risk should we undertake?

Here there are the results of this part in which the participants marked the following

observations

• Participant 7: “We have to correlate risk and benefit. There should be a proportion between means

(risk) and ends (benefit). We shouldn't also forget that in doing so there is the problem of

evaluating a risk, as something that can be subjective, individual”.

This brought us to the general question: What kind of criteria do we use to evaluate a risk? Do we have

only individual social and cultural criteria to evaluate a risk?

• Participants 2 and 5: We have to clarify that relationship in the sense of a relationship between the

probability that something happens (statistical criteria) with that of its seriousness

• Participant 7: (not forgetting that) “the evaluation of the risk is a process”

• Participant 5: (to this last point) “we have to evaluate the risk in a short, medium and large time”

• Participant 7: “Another condition is that risks should affect the minor number of possible persons

involved, and that implies the smaller possible danger”.

• Participant 6: “We should control the risk, have the possibility to come back”

• Participant 1 commenting to participant 6: “If we could control a risk we will not have a risk. We

have to distinguish between the task we have to try to foresee, the risk with the impossibility to

have already a control of them that will avoid the same dimension of risk”.

The facilitator invited the participants to see those criteria in relation also to the example.

The XTP researcher, participant 1 above in Table 1, dissenting on the judgment of the

example’s giver answered in a different way to the question: “We shouldn't undertake those

risks, in which, even if the number of persons involved is limited, the risk is potentially very

dangerous”.

This was for the XTP researcher the answer to the general question in relation to the

example we had chosen.

Discussion of the group

Three participants, all of them interested in several issues of biotechnology (participants 7, 4

and 9), thought that the moral obligation plays a role, but that we have to add the criteria of

the relationship between risk and benefit. One of them thought also that not only a moral

obligation implies the assumption of risk. There are also labour responsibilities which can

imply the assumption of risks. This participant seemed to come back to the factual question:


if you decide to work in a certain way, you have to be consequent with that or with the

compromise you have made.

After a digression, this participant recognized that the answer we have made in the second

section have a theoretical relevance, but not an ethical one. We come back to the answer of

the XTP researcher, participant 1, and the group expressed, even if not in the form of

complete phrase some additions to that criteria, following the observations listed above.

Improving the judgment, the XTP researcher said: “We shouldn't undertake those risks, in

which, even if the number of persons involved is limited, the risk is potentially very

dangerous. The assumption of a risk will depend on the probability it will happen and the

benefit it will imply”.

Another observation of the XTP researcher, participant 1, wouldn't be discussed by the

participants: taking into account the problem of evaluation suggested by that participant that

each one has its own ethics.

This led to the question: How to evaluate a risk when there are different perspectives in

play?

Fourth session

Coming back to XTP

Relevance of the dialogue to XTP (the most relevant argument of the participants):

• Participant 6: “We have considered different relevant aspects for XTP”

• Participant 2: “To find a consensus with persons who have different knowledge and

values”

• Participant 7: “The table 1 and the criteria as a point of departure”

General consideration of XTP

• Participant 2: “We should take into account the factor risk in the dimension of fear”.

• Participant 6: “We should take into account that there are also other risks (patient risk)”.

• Participant 2: “In the case XTP will function the benefit for the society will be great”.

• Participant 1: “We should also take into account the animal rights and the fact that some

allotransplants are possible thanks to organs from healthy persons”.

Difficulties in the dialogue


• Participant 5: “I don't see clearly the connection between the example and the criteria we

have reached”.

• Participant 1: “We have had difficulties when we have clarified the different meaning of

being able to and to have to”.

• Participant 3 and example’s giver: “In the case of our example we cannot apply the

criteria that we have found because we know the risk, in XTP we don't know the risk”.

• Participant 8: “The judgment isn't an answer to the question because we have worked in

another direction”.

Other open questions

• Participant 2: “Who estimates the risk?”

• Participant 7: “The theme of subjectivity in the process of evaluation of a risk as central”.

Second Dialogue

Theme: Which risks to take?

Question: Which risks are we allowed to undertake?

First session

Towards the example

Examples:

• Participant 8 gave the first example: To drive by car to Cadiz, after having suffered few

months ago an accident in which some friends have had serious consequences (risk

having an accident, fear about it)

• Participant 1: To choose to utilise private transport instead of public one after having had

a dialysis session and being tired (desire to arrive in a shorter time, risk to drive in a bad

condition, balance risk and benefit)

• Participant 3: To exercise the legal profession in which I was working or to accept a grant

for the investigation at the University (risk and incertitude, balance between risk and

benefit) a change in my life (choosing among different profession)

• Participant 4: To undertake the risk to undergo an amniocentesis during the pregnancy

(risk for the baby, mother (emotional))

• Participant 5: During a research with adenovirus a person involved, a technician refused

to participate in the experiment, because of the risk involved in using his technical

instrument. To decide to follow or not this research -decision of research's chief (to

undertake the risk involved in the trial, different interests in the participants)-


• Participant 9: To continue with a job or to go abroad to make new experiences (risk to

loose security, benefit to make new experiences). Choosing among a profession and a

way of life.

• Participant 2: To submit oneself to a transplant of heart and kidney (risk to die)

• Participant 7: To come back from EU to Spain after having received a proposal of job

• Participant 10: To accept a research grant to work on HIV in a possible dangerous

context (a laboratory that wasn't conformed with the actual norm of risk, because of the

lack of funds) (risk for the health, risk by not having the grant)

• Participant 11: To go to Madrid to make a master or to remain in the place in which I lived

to prepare a working project with good possibilities, possible new patent (risk in the

uncertainty)

• Participant 6: To drive by motorbike. To undertake a personal risk that can be also

provoked by other persons and that can affect others persons (relatives, other drivers,

etc.)

Choosing the example

The participants chose the example number 9, raised by participant number 10, research

grant to work on HIV, with great majority (nine person chose this example as the first

preferences, two others chose it as a possible interesting example, no one expressed refusal

to work with such an example), after a long lasting process of argumentation in which the

participants, taking into account the arguments of the others, changed their own opinion.

Arguments in favour of the example accepted by the group:

• It concerns with a collective risk and has also a personal relevance. There is an analogy

between the problem of infectious disease in HIV patient and a possible epidemics

caused by XTP.

• With regard to the example of amniocentesis which reached some preferences, it was

argued that the example of the research grant does not present the involvement of other

ethical discussion as, for instance, the problem of abortion, which might disturb the

course of the dialogue.

• With this example it is possible to assess at a certain degree the probability of the risk; it

isn't only a question of a way of living. The example’s giver could evaluate the risk to

contract HIV.

The process of choosing the example

• Participant 3: initially chose participant 5’s example and asked for the risk in that

situation. The answer of participant 5 was: "There isn't scientific evidence that

adenovirus can provoke a serious illness. Nevertheless the laboratory didn't respect the


minimal conditions required by the law to control the risk". (Conflict between legal

prescription and scientific interests)

• Participant 8: supported the example of participant 3 because the decision implies a

change of life; the decision implies a good argumentation; it is a decision that affects

other subjects and that we can understand without difficulty; it has also a relationship to

the XTP, from the point of view of the patient.

• Participant 3: After having listened to participant 8, participant 3 changed his opinion.

The best example is that of participant 10. It refers to a risk that is analogue to that of

XTP, HIV infections and collective risk, and it concerns also a vital decision.

• Participant 5: The examples that are too personal or vital are not adequate. You cannot

evaluate the consequences and the results of your decisions. Was it better or not to work

in a sector or in another one? How could we answer to this question? You cannot

evaluate the benefit. The adequate examples are those of participant 2, participant 4 and

participant 10 because it is possible to quantify the risk and evaluate the benefit.

• Participant 4: agreed with participant 5, but added the example of participant 1 and

expressed doubt on the example of participant 2. It is too individual and personal. It

doesn't seem to look to a collective risk.

• Participant 10: preferred the example of participant 4 for the risk for the child and for the

family.

During this discussion some questions were raised:

• Participant 9 stated that there are different perspectives in XTP, for instance that of the

patient, that of the researcher. The choosing of an example varies taking into account

the preferences of the participants. Which are our criteria?

The facilitator suggested that the criteria depend on the participants and not on the facilitator.

Nevertheless an example that has only consequences for an individual could bring the group

to an analysis not so interesting for XTP. In any case the decision should be a decision of the

group.

• Participant 7: “What does it mean "vital"?”. This participant had problem for

understanding the arguments of the participant 5. "Vital" can mean something personal,

that affects a way of living, as well as something related to question of life and death.

The argument of participant 5 may be concerned with the first sense of vital.

There was also a brief clarification of the possible consequences of the example of

participant 2 for a collective risk.

Provisional preferences results:


• Participant 5, 1 vote


• Participant 4, 2 votes

• Participant 10, 3 votes



After having listened to the arguments of the others, there was a final round for choosing the

example.

The example of participant 10, research grant for work on HIV, was chosen:

Arguments in favour of this example, accepted by the group:

• It concerns with a collective risk and has also a personal relevance. There is an analogy

of the problem of infectious disease in HIV patients and a possible epidemic with XTP.

• Considering the example of participant 4 who has reached some preferences, the

example of participant 10 avoids the risk to involve other ethical discussion as, for

instance, the problem of abortion, which might disturb the course of the dialogue.

• It is possible to measure at a certain degree the probability of the risk; it isn't only a

question of a way of living since it should be possible to evaluate the risk to contract HIV.


Second session

The example clarified by the participants and by the example’s giver.

Context

The possibility to accept a grant of research to work in the field of HIV.

Situation

Example’s giver said: “I could choose among different possibilities. I was working and I was reflectingon what to do; to begin a master, to research in the cytogenetics field, or making other things. Toaccept this grant seemed to me the best option. Nevertheless the place in where I have to work wasn'ta sure place. It was a restructured patient’s room in which the conditions of security to perform theresearch were lacking. (I knew the way of transmitting HIV and the norm of security required). I haven'tthe possibility to change these facts, even if I had spoken with the responsible of the research. I talkedwith the other researchers as well as with my partner and family. The first one, to know the situation ofrisk, the second one to share (in the sense of counseling and supporting) my personal decisionprocess. My partner left me the responsibility of the decision.

Problem

What is the best option?

Risk

High risk (probability) of having an accident in the laboratory. Infection of HIV that could affect me andother persons (I was working with infected blood). Not to achieve a professional satisfaction, and abetter economic situation. Other illnesses that are possible to transmit with blood that I didn't know.Risk connected to a possible denounce to the authority.

Benefit

To obtain this grant. To improve the own economic and professional situation.

Social benefit

To work in the field of HIV is perceived by society as good and worthy.Motivation (This point was mentioned by the group but not deepened under the suggestion of thefacilitator)Maybe it was a question of professional and private satisfaction, joined to the economic advantage ofthe grant.

People affected by the action

The partner, the family and friends. Other persons: patients, persons who lived in contact withexample’s giver, persons with whom the example’s giver was working.

Action

To accept the grant trying to negotiate some conditions of security. Failing in this effort the participant(example giver) did accept the risk.

Alternatives of action

To accept the grant and then to deny to work in such a condition. To negotiate with the team betterconditions for working. To denounce to the authority the lack of security norm. To speak with otherpersons, looking for other responsibilities.


Towards the judgment

Were you allowed to undertake the risk in that situation?

Judgment that wasn't reformulated because the example giver agreed on it.

Example’s giver said: “Yes, because I considered myself able to reduce the risks, assuming

additional preventive measures (regarding blood, wound, gush)”.

Arguments of the participants

In a round session, the participants, accepting that the answer was an affirmative one,

formulated different arguments. The facilitator noted their judgments on a personal paper

taking into account that not everyone was able to express in a synthetic form the

argumentation. The following answers are a summary of the argumentation.

“Yes, it was allowed to undertake the risk, because…

• Participant 5: “Even if there could be damage to others, taking into account the previous

knowledge and the expected benefit, the damage seems to be under control as well as

minimized”.

• Participant 4: “Taking into account risk and benefit, as well as the measures adopted to

reduce them, there was a low probability that other persons were affected”.

• Participant 1: “The fact that I was myself undertaking a risk, together joined with the

attention that I have to pay in my work, made it unlikely that the other were damaged”.

• Participant 11: “The own risk as well as the risk to affect other persons was lower then

the benefit (professional benefit)”.

• Participant 7: “There was an autonomous decision and no conflict of values”.

• Participant 8: “The example giver was acting according to own values” (Participant 8

would have defend to take more into account the emotional component).

• Participant 6: “The choice was accompanied by increasing the measure of security and

accepting the risk implied in the own research”.

• Participant 9: “The probability of damage was low; there were additional measures of

security; the other professionals were working in the same conditions; the possible

damage to other persons was under control; there was more a personal risk than a

collective one”.

• Participant 2: “Benefit was greater than risks. Infections were under control”.

• Participant 10: “There was a previous knowledge of the risk and an assumption of

additional cautions.”

• Participant 3: “Benefit was major than risk”.


Third session

From the arguments of the example to an answer to our general question

The facilitator collected those arguments under the shape of a general theme, because in

the precedent phase it wasn't possible to describe them in an explicit form, taking into

account the difficulties of some participants to express clearly and synthetically in a phrase

his/her argument and the time at disposal. Here there is the table at which the participants

have had the possibility to make additions:

Factors (expressed by the participants in their different argumentation) that have to take into account toestimate if it is allowed or not to undertake a risk as:

• Knowledge of risk

• Influence of the context (the way of working in a specific field)

• Autonomy of decision

• Control of the damage

• Others persons affected by the actions

• Relation between benefit and risk (quality of risk, quantity of risk, uncertainty)

• Values are not in conflict

• Emotional interest

• To be involved in the research

The facilitator suggested to take into account those criteria that have been reached from our

example, in order to answer our general question (not forgetting the sense of being allowed

to). Here the participants worked with concrete and simple phrase, trying to improve what

they were writing and opening new questions.

Which risks are we allowed to undertake? (or Which risks are them allowed to undertake?). We areallowed to undertake those risks in which… (It is allowed to undertake those risks, in which…)

• Participant 4: “The own benefits as well as that for others prevail over the damages to be feared”.

• Participant 5: “Existing knowledge of the risk, the relationship between risk and benefit is clearlyfavourable towards the benefit”.

• Participant 4: “In the first phrase there is the dimension of uncertainty, in the second the questionof the knowledge. In the second phrase it is implicit that I don't act if I don't know the risk. In thefirst one there is the dimension of uncertainty. It is more open”.

• Participant 3: “The second phrase is too strict. We should take into account the dimension ofuncertainty”.

• Participant 5: answered to the objection clarifying that the knowledge is always reasonable. Newformulation: “Existing a reasonable knowledge of the risk, the relationship between risk and benefitis clearly favourable to the benefit”.

• Participant 4: suggested that we could put in the second phrase the dimension of the others thatwas present in the first phrase.

• Participant 1: suggested the rephrase in the following form: “Existing a reasonable knowledge ofthe risk, the relationship between risk and benefit, is clearly favourable to the own benefit or to thatfor others”.

• Participant 10: He specified in the following way: “Existing a reasonable knowledge of the risk, therelationship between risk and benefit is clearly favourable to the own benefit as well as that forothers”.


relationship between risk and benefit is clearly favourable to the own benefit as well as that forothers”.

• Participant 4: stated that we had to clarify the meaning of "to be feared" (phrase 1): “It issomething that we don't know, we suspect that something can happen but we haven't a scientificbase”. If participant 5 meant with "reasonable knowledge" the same, there had no problem toaccept the revised version. Moreover, this participant suggested to write instead of "own" and "forothers", “individual” and “collective” by saying: “Existing a reasonable knowledge of the risk, therelationship between risk and benefit, is clearly favourable to the individual and collective benefit”.

• Participant 5: “To be feared is something we fear about. A term more subjective than reasonableknowledge”.

The group agreed with the last formulation of participant 4 that summarized that of

participant 5 and the others participants. The group moved to the question of "when is

knowledge reasonable".

Towards a theme connected with the answer of our criteria

When is knowledge reasonable?

This topic was addressed to clarify the meaning of reasonable, looking at the example and not

forgetting the direction of our question:

• Participant 1: “We have sufficient information or data to take the necessary cautions to avoid the

risk (the knowledge of example’s giver of the reason of the HIV infection)”.

• Participant 11: “With this answer we are working at the second question proposed in the dialogue:

not that risk we are allowed to undertake, but those risks we should avoid”.

• Participant 5 addressing to participant 11: “We are answering to our question, but in a positive

way”.

• Participant 11: “The arguments we are using are suitable for both questions. The criteria we have

mentioned is valid for both questions, if we correct the relationship risk benefit in the sense of

avoid a risk”.

Coming back to the question of reasonability

• Participant 2: “We have sufficient data with which we can control the possible damages”.

• Participant 5: “I think that instead of "control" we should say "predict" the possible damages”.

• Participant 4: “The hypothesis should be predictable in the sense that it is scientifically

defensible (in the case of the example, the kind of knowledge we have on the way of transmission

of HIV)”.

• Participant 9: “We should add also what is unpredictable”.

• Participant 5: “We move always in a certain context of uncertainty”.

Different aspects of the uncertainty: Uncertainty as something we cannot foresee (an accident);

uncertainty as probable in a scientific investigation.

• Participant 6: “Nevertheless we need some criteria to evaluate the risk and the degree of

uncertainty we can accept. These criteria are scientific but also social”.


uncertainty we can accept. These criteria are scientific but also social”.

• Participant 11: “The criteria are more individual”.

We open the further question: What criteria do we have to evaluate a risk? How and who evaluate a

risk?

• Participant 5: “A reasonable knowledge can be understood in three sense

a) If A then B (empirical investigation)

b) If A then B (There is a theory that, even if we haven’t had an empirical evidence of

the relation "if A then B" justify its possibilities)

c) B happens in an unpredictable way

A knowledge is reasonable only if a) or b)”.

• Participant 7: “When we evaluate a risk we have also to imply a certain confidence in our

evaluation: the problem of subjectivity”.

At the end of the dialogue participant 8 suggested not to use reasonable knowledge, but to use the

information we have at disposal at the moment. We haven't time to come back to the phrase, but it

seems that it is valid, under the condition that we have to clarify further the aspect of reasonability.

End of the dialogue and final results

“Which risks are allowed to undertake? It is allowed to undertake those risks, in which

existing a reasonable knowledge of the risk, the relationship between risk and benefit is

clearly favourable to the individual and collective benefit”.

New questions to search for answering our general questions:

• Who is able and how is possible to evaluate a reasonable knowledge?

• What role the confidence does play in this process?

• How evaluate and who does evaluate a risk?

Dimension of risk:

• Uncertainty: Uncertainty of first type: something unattended can happen: unforeseeable

• Probability: The probability that something happens. Uncertainty second type. Probability

and reasonable risk (reasonable knowledge of a risk, reasonableness in undertaking a

risk). The problem of evaluation of the reasonable in the theoretic as well as in the

practical dimension.


• Seriousness: The seriousness of the event (the problem of an evaluation-subjective and

objective criteria, the dimension of fear).

Fourth Session

Moving to XTP

Proposal made by participant 4:”The answer to the question who does evaluate and how

evaluate the risk in XTP is different if we take into account the different risks. For instance in

the risk of death for a patient it should be the patient who does evaluate whether to confront

or not the risk; in the case of a pandemic risk it should be a committee of experts to do such

an evaluation, in the case of the allocation of resources it should be necessary to involve the

society in a process more and more democratic (…)”.

Who should evaluate a risk?

• Participant 1: “It should be the patient (risk of life)”.

• Participant 2: “The patient is not the only actor that evaluates the risk, we don't know the

reaction of the transplant and the physiology”.

• Participant 8: “It should be the patient to evaluate the risk, with all the uncertainty we

have”.

• Participant 2: “It is necessary to inform the family”.

• Participant 3: “If we have avoided the risk of a pandemic, it is a question of the patient.

But if this is not the case, we have also to say something. The question is how to do it”.

• Participant 1: “I agree with participant 3. The experts decide if there is or not a risk and

not only for an epidemic”.

• Participant 3: “There are two different way of uncertainty: foreseeable and not

foreseeable”.

Who does evaluate the risk the technicians are undertaking?

• Facilitator: “The expert can say if there are or not a risk, but in order to have this

knowledge of risks are we already assuming a risk? What do you think about it?”

• Participant 10: “Who does evaluate the risk which has to undertake the experts?”

• Participant 4: “Not only the researchers who work in a specific research program,

because they are directly involved. We have to imply more actors in the decisional

process (other experts, ethics, politics, and law experts, etc.)”.

• Participant 1: “The experts shouldn't have any interest in the theme (other experts)”.


This last consideration moved the group to a dissent. It was not clear if this last criteria (not

to have any interest in the research) was acceptable.

4.2.1 Transfer from the dialogue to the XTP issue

The main ideas of the last part of both dialogues, called as “transfer to XTP”, are

summarized in this section. All the quotations, cited in the original language, belong to this

last part.

4.2.1.1 NSD1

The example chosen by the participants in the first dialogue was well considered by the

audience because being a high-risk activity: to drive in the state of somnolence, which is a

very dangerous activity.

There exists a risk not only for the person who drives the car, but also to the rest of the

passengers and other people who are driving on the same road. In case of an accident, not

only the driver might get hurt, but also other people in the car and other drivers who are

using the same road at that moment.

In this example, the decision is taken by one person, the driver, but the possible harm affects

other people. It is a situation similar to xenotransplantation. The decision maker is the

patient, but in case of infections, the damage could affect his or her relatives and other close

persons. These persons might get harmed but they did not participate in the decision.

The participants discussed about the way how to evaluate the probability of a risk, its

seriousness and the possibility of controlling alternative outcomes of the decision taken.

One of the main problems that must be faced is to know the probability of the risk. This is, to

quantify the probability of an outcome from a concrete action. If this probability is known, the

decision maker has more information and this is an extra help in order to take a right

decision. The following quotations show a discussion among the participants when they deal

with the unknown probability of the risks in xenotransplants. The researcher on XTP says

that, nowadays, there are not enough evidences to prove the risk of infection.

Yo creo en relación con los xenotrasplantes, antes lo comentábamos en el descanso, es que no se puede

aplicar tanto el ejemplo, porque en el ejemplo sí que se conocen los riesgos que puedes asumir, y en el caso de

xenotrasplantes es más difícil tomar una decisión porque tampoco conoces los riesgos.

Hay riesgos que se conocen...

En el caso del coche sí, sabes que hay un riesgo, porque (ININTELIGIBLE) un accidente de tráfico, y en el caso

de los xenotrasplantes tampoco se conocen los riesgos, lo que puede ocurrir realmente.

¿Estáis de acuerdo con esto?


¿Que no se conocen los riesgos?

Que en el accidente... que en el caso del ejemplo que hemos planteado, el riesgo está bien conocido y en el

caso del xenotrasplante el riesgo no está conocido... no se sabe de ninguna forma lo que podía hacer, es algo

totalmente desconocido.

¿En el caso del xenotrasplante está preguntado?

Sí, es una pregunta.

Si analizamos... si nos guiamos de la evidencia, al día de hoy no tenemos ningún riesgo, es decir, se está

hablando de la evidencia, cuando digo la evidencia es lo que se ha estudiado, es decir, los modelos que aquí... yo

creo que el matiz estaría en... me parecía muy importante cuando se intentaba... digamos, ya se han intentado, se

está intentando reproducir en el laboratorio todas aquellas potenciales circunstancias que pueden realmente

producirse si algún día llegamos a trasplantar órganos de animales, y en este caso, de cerdos que es el animal con

el que estamos trabajando estos días, y a día de hoy, no tenemos ninguna evidencia de que exista ningún riesgo.

Another relevant factor is to know the seriousness of a risk. If this seriousness is well known,

the decision maker has more information about the consequences.

It is important also to have information about the different results which can appear after

taking risks. In the case of xenotransplantation, the results of the fact are not well known yet.

The uncertainty is very high. This argument emerges in the following discussion among the

participants.

El riesgo, es que... vamos a ver, una cosa es que yo creo que el riesgo en este caso... aquí ya entramos en

matices en un ambiente más médico, en este caso el riesgo, cuando ya hablamos de un riesgo, aquí sí que

matizamos lo que decíamos antes, yo por eso también mis propuestas las he llevado en ese camino, porque el

gran debate que ha existido... es decir, una cosa que de siempre se ha considerado aceptable, cualquier

intervención conlleva un riesgo, Carmen nos explicaba un ejemplo yo creo muy claro de una situación personal de

ella, pero claro, hubo un riesgo individual que es la persona la que tiene que decidir en su momento y en función de

sus circunstancias si lo acepta o no, el problema potencial del xenotrasplante es que existía un riesgo... o se ha

considerado, teóricamente siempre porque no existe ninguna evidencia, que es lo que decía, de que pudiese ser

así, pero desde un punto de vista teórico y un poco como lo que he dicho también anteriormente, siguiendo el

modelo de lo que ha pasado con el SIDA, de que una infección procedente de un cerdo pudiese infectar a través de

un paciente y a partir de ahí extenderse a todo el resto de la población, ese ha sido el gran riesgo desde el punto

de vista de preocupación y yo creo que lo que ha parado y lo que paró el ensayo clínico en humanos fue por este

riesgo potencial, pues bien, a raíz de los últimos cuatro años, este riesgo potencial de transmisión de infecciones

del cerdo a los receptores, se ha investigado en diversos modelos a animales y al día de hoy no existe ninguna

evidencia de que esta transmisión de infecciones exista, por lo cual el riesgo éste, el riesgo del que estamos

hablando de lo que es la transmisión a día de hoy, este riesgo en concreto no existe, lo cual no quiere decir que

pase, estamos en lo de siempre, es decir...

Hasta el momento.

...hasta que tengamos la experiencia, los modelos, lo que se ha hecho ahora, tenemos que decir que este riesgo

no existe, lo que pasa que nadie... el riesgo cero tampoco va a existir nunca, ni tampoco nadie va a poder nunca

decir que no existe ningún riesgo.

(…)

Para mí es mucho más difícil cuantificar un riesgo cuando, por ejemplo, no se tiene una estadística de casos que

han ocurrido, porque hemos hablado antes de que te puedes basar en la experiencia para tomar una decisión o


incluso para valorar un riesgo posible, hemos hablado de estadísticas, en el caso de los xenotrasplantes como es

una situación nueva es difícil contar con esa información previa para tomar una decisión.

To sum up, there are three factors which must be taken into account: the probability of the

risk, the seriousness of the risk and the control of the different results.

Benefits and risks of a concrete action must be balanced in order to take a better decision.

All the participants reached a consensus on this idea.

But the difficulty appears when people try to value a risk. This value is often subjective,

because it depends on their personal point of view. Some participants pointed out that the

own experiences can help in the process. If a similar situation has appeared in the past, it is

easier to value the risk in order to take a decision. In the following quotations one participant

suggests that the process of valuing a risk depends on the personal situation of the patient

who needs a transplant, among other factors.

El diálogo como método me parece muy interesante pero la visión de cada persona del riesgo, no sólo en la

valoración externa sino la valoración individual, ya se ha comentado varias veces, es completamente diferente de

unas personas a otras, y eso está demostrado en las encuestas de población, las contestaciones dependen

exactamente de la relación que tengas con la enfermedad, una persona sana como tiene el problema lejano

contesta una cosa, una persona que tiene un familiar enfermo contesta otra cosa, la persona que está enferma

contesta otra cosa, la persona que está en cuidados intensivos en una situación muy grave, esperando por el

trasplante cardiaco, contesta otra cosa completamente diferente, o sea, va a ser imposible...

Estamos en un marco, pero el marco del paciente.

Sí, pero el riesgo o la valoración de un riesgo, el riesgo que cada uno es capaz de asumir y lo que le importaría

que la sociedad asuma es completamente diferente en tanto en cuanto la enfermedad le afecte a él o a alguien

relacionado, esto va a ser difícil de evaluar. Por eso me parece que el diálogo de este tipo, conducido entre

personas con diferentes capacidades de implicación o de información es fundamental, es un buen instrumento.

One extra difficulty is the task of calculating the benefit of an action. If the decision maker

does not know the value of risk and benefit, it is very difficult to balance them. In this case,

there is no enough information to decide. The following quotations reflect a discussion about

the task of calculating the benefit of xenotransplants, individual benefit versus collective risk.

Yo lo que pienso fundamentalmente es el tema de la subjetividad que hemos dicho desde un principio, a la hora

de medir el riesgo, como comentabas antes, no es lo mismo el riesgo que ve el paciente que el riesgo que puede

ver el resto de la sociedad, o la familia o el resto de la sociedad, lo primero porque los beneficios para unos son

claros, para otros son relativos y para los otros no les afectan en absoluto, entonces, es lo que hablábamos del

balance riesgo-beneficio, en el ejemplo nuestro estaba muy claro el riesgo, la probabilidad podía ser mas o menos

alta pero el riesgo estaba claro.

¿El riesgo para nosotros?

Y el beneficio, estaba muy claro, podíamos estar más o menos de acuerdo con el beneficio, pero para todos era

el mismo beneficio y para todos era el mismo riesgo. En el caso de los xenotrasplantes, yo veo que el problema

puede ser que entre el desconocimiento y luego aparte la distinta posición en un determinado momento, ni los

beneficios sean comunes ni los riesgos sean comunes, lo cual hace todavía más complicado el problema.


Time is another factor that was pointed out by the participants. Sometimes, risk in a concrete

decision is not considered in long term. The decision maker only considers the

consequences in short term. But it may be that these consequences turn out to have bad

results or unwanted damages in the long term. It may also be that the decision maker does

not take into account a different scenario which may appear in the future.

The possibility of going backwards if an unwanted damage does occur must be taken into

account. The decision maker must consider the possibility to go back to the starting point of

the decision process if the decision has had unwanted consequences. If the consequences

of the decision were irrevocable, the situation would be considered of high risk.

An approach or judgement based on grounds of ethics and morality can be considered as

very unstable when people have to decide in a risky environment. Ethics or morality is a

highly variable concept among a group of persons, so it is possible to find several

justifications depending on who is making the decision. One action or decision may be

justified for one person, but it may be a mistake for another. So consensus was not reached

in the group about the significance of the ethical or moral approach to decide in a risky

environment.

4.2.1.2 NSD2

During the second dialogue, the example cited in 4.1 was considered adequate by the

participants because of its similarity to the xenotransplantation case.

There is only one decision maker, the person who accepts the job in the laboratory even

though the working conditions are precarious. In the transplant case, there also is only one

decision maker, the patient. Only him or her has to decide if they want to receive an organ of

animal origin. In the following quotations some participants discuss about those persons who

take part in the decision of accepting a grant in a laboratory without enough security

measures. This situation was the chosen example in the NSD2.

-Por ejemplo, la cuestión... los resultados no son sólo las cosas que hemos escrito, los criterios, las normas, que

sería ese juicio, sino también las preguntas, el quién y cómo evalúa los riesgos, ¿tiene sentido esa pregunta?, ¿es

una pregunta que matiza?, en la cuestión de los riesgos de los xenotrasplantes ¿está claro quién y cómo se

evalúan los riesgos? En nuestro caso tampoco estaba... sin miedo, se pueden decir también cosas equivocadas.

Yo creo que en el caso concreto sí que había un alguien y un cómo se evaluó la razonabilidad, ese fui yo, y de la

forma que lo hice en ese momento, o sea, que en el caso concreto sí que hubo un quién y un cómo...

Hay un cómo y no lo habéis apuntado en el curso de discusión, en el cómo, no es que estabas tú sólo, estaba tu

familia, tu pareja y los otros que trabajaban, es decir, que no era... habías incluido en tu proceso de toma

decisional, de una u otra forma, otros actores, porque eso es lo que has dicho tú...

Sí... pero el que los evalúa soy yo, o sea, ellos aportan más datos, más información a la hora de evaluar esta

razonabilidad, ellos aportan más información, información de cómo a ellos les afecta, cómo a ellos les podría

afectar, cómo... pero al final, el que lo evalúa es uno, el que toma la decisión.


Es decir... es curioso como después de haber hablado y no hemos tocado ese tema del proceso decisional, que

era otro tema que se podía tocar, por ejemplo, por lo que está escrito allí, uno podría también entender que los

otros sí, es decir, los otros que trabajan contigo, te han dado más datos, también tu familia, en el caso de la pareja

uno podría también pensar “bueno, yo te he expuesto la situación, hemos hablado, hemos considerado y he

pensado teniendo en cuenta esto...”, es decir, un proceso decisional en que va a tener un papel importante también

otras personas. Uno también lo puede pensar así.

Sí.

¿Cómo lo ves tú?

En el proceso sí van influyendo determinadas... otras personas con un grado mayor o menor de influencia, pero

excepto quizás la pareja, en el caso concreto sí que no fue ningún consenso, no fue una evaluación común, pero

que podría haberse dado el caso de que fuese una evaluación común, es la única restricción a quién y cómo, pero

al final el “cómo” sí que incluye a todos estos... a estas consultas, a estas nuevas informaciones y nuevas

opiniones, pero el “quién” no las incluye. Yo creo que en el “cómo” sí que las puede incluir, ¿cómo? consultando,

valorando las distintas opciones y opiniones, pero al final el “quién” sí que es... fui yo en ese caso.

The benefit from the job is also personal because the salary, the accumulated experience as

well as the professional recognition are advantages or benefits for the decision maker. In the

xenotransplant case, the benefit is personal, too, because it is the patient who benefits.

The risk of infection with HIV in the lab can have several effects. If it is only the decision

maker who gets infected, the disadvantages from the decision affect only this one person.

But if the decision maker infects other people, then the disadvantages are on a social level.

The affected parts can be the people with whom the decision makers maintain a close

relationship, like family, friends or partner. As we know, HIV is mostly transmitted through

interchange of blood, semen or vaginal fluids. During NSD2, one participant explained the

differences between the known risks of researching on HIV and the unknown risks in

xenotransplants.

-Cuando se habla de los riesgos en los xenotrasplantes casi la cabeza se va al riesgo de la epidemia, de la

pandemia, un riesgo para lo colectividad, para los demás, no sólo para un beneficio individual.

(…)

-Es que justo era sobre ese punto. Yo lo que pienso es que aquí hay dos posibilidades, si en un momento dado

tenemos una cierta garantía, o una garantía científicamente importante de que no se va a transmitir pandemias, yo

también estoy en que el criterio básico es el del paciente, puede someterse a un riesgo elevadísimo si con eso

espera salvar su vida, es decir, ya luego el requisito... siempre que se le informe de que el riesgo es mínimo, que

se dan las condiciones... pero si estamos en una situación como la actual, donde no hay evidencia científica de que

no haya transmisión de pandemias al resto de la población, “¡oiga, que yo me pongo en riesgo!”, también tendré

que consentir de alguna forma, no puede consentir sólo el paciente, aquí yo creo que en la medida en que el riesgo

es global, yo... igual no yo personalmente, pero representado por alguien también tendré alguna palabra, porque si

se genera un nuevo SIDA, que ya está constatado científicamente que es de transmisión de animal a humano, vía

el xenotrasplante, que al fin y al cabo ¿qué es?, pues una ruptura de la barrera interespecies, pues una pandemia

de esas características pone en riesgo a todo el mundo, no sólo al paciente en primera persona, luego... yo no sé

cómo habrá que hacerlo, si a través de cuerpos, como decía Blanca, organismos específicos, etc., pero mientras

haya un riesgo... habrá que ver la magnitud del riesgo, por eso antes discutíamos tanto el nivel de incertidumbre,

porque claro, ahí está la “madre del cordero” aquí, en cuál es la magnitud de incertidumbre a partir de la cual


consideramos que el riesgo es razonable asumirlo o no, y por eso... pero quiero decir que mientras haya un riesgo

científicamente contrastado como es ahora, pues ahora en laboratorio se ha contrastado que cabría la posibilidad

de que retrovirus porcinos pasasen a humanos, entonces mientras exista esa evidencia, tendremos que consentir

todos ya, otra cosa es que lleguemos a un punto en el que se elimine esa incertidumbre, y que las investigaciones

demuestren que es una incertidumbre infundada y entonces el rol para mí es el del paciente.

If the transplantation of a pig organ causes infections or transmission of disease from the

animal to humans, then the problem can be individual or collective. If the infection turns

epidemic, the disadvantage can affect all of society, and not only the patient and its

immediate surroundings. Therefore, the situation of the selected example and the one of

xenotransplants is similar.

There is an important difference between the two, which is the knowledge about the existing

risk. In the case of HIV, we know the ways of transmission of the virus as well as the

seriousness of the consequences. Also, there are some treatments available for AIDS

patients. This means that in spite of the risk, the problems are well known and we have a

therapy available to transform AIDS into a chronic disease, at least in the industrialised

countries.

However, we do not know the possible consequences from the transmission of pig viruses.

We do not know about the diseases which this might cause nor would we have a specific

treatment available. This means, that in the case of xenotransplantation neither do we know

the probability of possible problems nor their seriousness. This makes the case of

xenotransplants more uncertain. These ideas are reflected in the following quotations.

Una pregunta para Asier, cuando hablaba de la incertidumbre, estamos hablando de incertidumbre como la... he

apuntado aquí, imprevisibilidad de las consecuencias, ¿nos estamos refiriendo a eso?, que aceptamos esa

incertidumbre como... vamos, lo he definido así, no sé, como asumir esos riesgos, como asumir esas supuestas

imprevisibilidades de las consecuencias posibles o margen de lo posible, ¿es a eso a lo que te referías como

incertidumbre?

Aquí cuando hablo de incertidumbre, precisamente es que aquí estamos ante algo incierto, incluso en la

posibilidad de que se materialice, es decir, es incierto incluso que se pueda generar una pandemia, aquí ya no es

incierto a nivel de probabilidad, hay un 10, un 20 ó un 30, sino es que puede que sea incierto incluso el objeto al

que nos referimos, en el ejemplo que poníamos con José, era incierto que contrajese el SIDA, puede tener un 2%,

pero una magnitud graduable, era un nivel de “incerteza” que podíamos graduar, pero es que aquí es incierto

incluso a qué nos... ¿es real o es irreal?, a eso me refiero aquí con incierto, a nivel de la pandemia, y es lo que me

parece que es lo que científicamente hay que despejar antes de pasar al paciente y luego ya, luego yo soy

partidario de que la voz la tiene que tener el paciente, pero claro, despejando eso también eliminamos un nivel de

incertidumbre para el paciente, porque si le estás ofreciendo una terapéutica que él puede pensar que es válida y

que es puro “cobayismo”.

The judgements and arguments in the second dialogue were up to a point similar to the ones

expressed by the participants in the first dialogue. However, the participants were more apt

in expressing their personal opinions.


A new concept which was introduced was the level of reasonability of the risk. Some of the

participants tried to explain the concept of “reasonable risk", but their intents of defining the

term lead to communication problems within the group.

According to the opinion of the participants who proposed the term, we can consider a risk to

be “reasonable” whenever

• there is sufficient information available to avoid the risk

• there is sufficient information to control possible disadvantages or damages

In the second dialogue, one participant propounded the idea of one type of risks which would

be commonly accepted by a social group. These risks are relatively frequent and society has

defined ways of collective behaviour, common to all individuals, in order to deal with them.

Some examples of those risks appear in activities like driving a car, working in the

construction sector, etc. This participant called them as “institutionalised risks”.

The risk, taken from the example, of working (here: doing research) under conditions of

relative lack of safety is a common one in our society, according to several of the

participants. This is a risk which turns up frequently, which is why society, in the end, came to

accept it as part of the process of looking for and deciding to accept an employment (here: in

the research sector).

4.3 Which coalitions as well as conflicts of interests did exist ordevelop?

Two participants in the first dialogue had wide knowledge about xenotransplantation because

they had published some documents and carried out several research projects. These two

participants had more information on assessing the risk in xenotransplantation.

Despite this wider knowledge in the central issue, their participation in the dialogue was

similar to the rest of the audience. On the other hand, it can be said that they were more

cautious than the rest of the participants, may be because of their previous research

experience.

In the second Neo Socratic dialogue, there were two participants who held similar ideas and

arguments about xenotransplantation. They were the two representatives of the patient

associations. Both had received an organ some years ago, so their link with transplantation

was very strong.

These two persons did not have a wide knowledge about the technical aspects of transplants

of animal organs, but they supported the arguments in favour of increasing the research on


xenotransplantation. They considered that this biomedical development offered the greatest

life expectancies for patients on the waiting lists.

Almost all the participants had the same knowledge about xenotransplantation in the second

dialogue. This fact may have been preventing any kind of coalition between the participants.

4.4 Which problems did arise?

There are no many actors involved in the xenotransplantation issue in Spain. Moreover, this

topic has not raised a great debate and interest among our citizenship as it has been already

stated in the Baseline Evaluation phase and in previous sections. It has not been easy to

attract the well trained and knowledgeable people on xenotransplantation for several

reasons. One of the main problems was the disponibility of time, as several invited persons

had to cancel their participation in the last minutes by agenda problems. On the other hand,

the attendants and active participants expressed views that more time would have been

necessary for extending the dialogue in order to reach more fruitful results. We found that

there is a paradoxical situation with respect to time availability criteria.

Thus, a problem reflected in the interviews and questionnaires was the lack of time and the

task of choosing the example, activity which takes up too much time, as some participants

explained. Each NSD was allocated six hours time for development, though only the last one

was devoted to the transfer phase. According to the opinions collected from the ex-post

questionnaires and the telephone interviews, the participants requested more time for this

last phase in order to enable the drawing of conclusions related to the specific case of

xenotransplantation. Many have also suggested the organizer to propose the examples in

order to short time in the initial phase. This argument probably runs against the same nature

of the NSD. Those raising this argument thought that it should favour the election of an

adequate example in order to make easy the correct development of the NSD. These ideas

were reflected in the telephone interviews, as can be seen in these quotations:

• NSD1, participant 1, xtp researcher: “¿Lo más negativo? Pues bueno, yo creo que lo más negativo tal vez

pienso que lo que habría que intentar o habría que buscar... a ver, aspecto negativo es que habría que trabajar

mucho más, la única cosa que no me gustó, porque continúo pensando que lo más difícil para mí es la

elección del ejemplo que vayas a discutir, es decir, yo creo que ese ejemplo no tiene seguramente... o no hay

que... los que trabajáis en este campo tenéis a lo mejor discutir... habría que intentar no dejarlo como una cosa

abierta que propongan las personas que estén allí, lo cual... o sea, si tú tienes que elegir entre lo que pueda

ser de allí, claro siempre tienes que asumes el riesgo que tienes que acabar eligiendo sobre temas que no son

muy... puedes acabar discutiendo sobre aspectos que igual no son... no sé hasta qué punto son muy reales, y

a lo mejor... lo que yo creo que a lo mejor los que trabajáis, los que organizáis el diálogo, pues tendríais que

proponer una... a ver, no digo que lo elijáis vosotros, pero sí trabajarlo mucho antes, es decir, traer un trabajo,

buscar qué ejemplos pueden ser los más indicados, y hacer una lista... lo cual no quiere decir que lo elijáis ni

mucho menos vosotros, pero hacer una presentación y entonces que el resto de gente sea la que lo elija”


Summary: most difficult problem is to work more (in the dialogue) and in particular in relation to the

election of the example.

• NSD2, participant 3, interested in bioethics: “Hombre yo creo que a nivel de diálogo la clave para que

realmente el diálogo sea útil es que el ejemplo, o el problema sobre el que se está discutiendo, en este caso

nosotros hablábamos de la experiencia de un compañero, sea realmente adecuada, es decir, sea la idónea, y

yo creo que realmente ahí en “dar el clavo” como quien dice, es lo fundamental. Si no, yo creo que te pierdes

en disquisiciones, en cuestiones paralelas, que pueden que no tengan nada que ver con el problema”

Summary: it is essential a good election of the example, otherwise there are risks of loosing the point,

of discussing unrelated things.

Another problem was the different dynamics operating during the performance of the two

dialogues. The NSD1 was much less fluent than the NSD2 as repeatedly outline along this

report. We are inclined to propose that these differences result from the composition of the

two groups as detailed under section 3.1. We have termed the first group as “positivist”,

while the second group was integrated by people more advised and interested on ethical

aspects. These second group participants would feel easier to comment around the ethical

dimension introduced in the dialogue. The facilitator also had an easier task in driving them

to express ideas following a nice track for the flow of ideas and arguments, would them be

shared or not by the others. This lack of fluency has been reflected in comments from the

telephone interviews:

• NSD1, participant 6, student of biotechnology: “Y ¿lo más negativo? Como negativo yo creo que igual sí que

hubo o pudo haber personas que no hablaron todo lo que debieran, porque igual no sabían muy bien lo que

tenían que decir o cómo tenía que conducirse el... claro, es que yo lo que no veía muy claro es si había un

guión o no había un guión, si había que decir lo que uno pensaba o si había que enfocarlo...”

Summary: the most negative was the absence of fluency. Difficulties to detect the existence of a

(hidden) script.

Another criticism arising from the questionnaires and interviews concerned the difficulty to

transfer the outcomes of the dialogue to the xenotransplantation issue, what has been

referred as “transfer phase”. The possibility to extrapolate the conclusions from the dialogues

to the issue of xenotransplants was not easily attained, the result from the NSD2 being

slightly more satisfactory. Some participants pointed out to this problem in the interviews:

• NSD1, participant 5, participant interested in biotechnology: “A mí el método me parece muy bueno y creo que

es una forma de sacar muchas cosas de la gente de forma no directa, sino un poco indirecta, y que la gente

se expresa abiertamente, eso de alguna forma induce al resto de los participantes a que hablen en muchas

ocasiones, de que relacionen unas ideas con otras..., pero yo por parte del moderador, igual estoy confundida

y eso no tiene que ser así, pero por parte del moderador iría como sacando conclusiones de vez en cuando,

iría como reorientando un poco lo que es el mecanismo, no los contenidos, ni modificar las conclusiones de la

gente ni nada, pero sí un poco ordenando, porque a mí me pareció eso, como un poco desordenado”


Summary: the method seems good to open heart and minds of people but there is a great distance

between the example and the topic. Intermediary steps may help.

• NSD1, participant 3, health jounalist: “¿Lo más negativo?... porque... que yo creo que no se llega a ninguna

conclusión”

Summary: the most negative?, because, I believe there was no possible to reach a conclusion.

4.5 Was the process managed efficiently?

The first dialogue was led by the facilitator and moderator Mr. Paolo Dordoni with

unquestionable success, despite of initial difficulties. The dialogue between the participants

did not start off smoothly. Some persons were reluctant to show their own points of view at

the beginning of the session.

There is one question related to the work of the moderator in the ex-post questionnaire. This

question aims to unfold the opinions of the participants about the moderation of the Neo

Socratic dialogue. The answers of both dialogues are shown in Tables 8 and 9.

Table 8: Assessment of the facilitator’s interventions

The facilitator …

I agr

ee v

ery

muc

h

I rat

her

agre

e

I rat

her

don’

t

agre

e

I don

’t ag

ree

Mea

n

Std

. Dev

i atio

n

1. Integrated all positions well13

(4/9)6

(4/2)1,32

(1,50/1,18)0,48

(0,53/0,40)

2. Included all participants in the dialogue12

(2/10)7

(6/1)1,37

(1,75/1,09)0,50

(0,46/0,30)

3. Reacted appropriately on conflicts8

(3/5)9

(4/5)2

(1/1)1,68

(1,75/1,64)0,67

(0,71/0,67)

4. Promoted a good atmosphere12

(3/9)7

(5/2)1,37

(1,63/1,18)0,50

(0,52/0,40)

5. Summarized the contents well12

(5/7)7

(3/4)1,37

(1,38/1,36)0,50

(0,52/0,50)

6. Kept an overview12

(3/9)7

(5/2)1,37

(1,63/1,18)0,50

(0,52/0,40)

7. Focused the discussion on the issue11

(2/9)8

(6/2)1,42

(1,75/1,18)0,51

(0,46/0,40)

8. Focused the discussion on the essentialissues

6(2/4)

11(4/7)

2(2/0)

1,79(2,00/1,64)

0,63(0,76/0,50)

9. Determined the course of discussion tostrongly

1(0/1)

2(1/1)

15(6/9)

1(1/0)

2,84(3,00/2,73)

0,60(0,53/0,65)


The participants in both NSD highly praised the capacity of the facilitator in integrating all

positions and visions. By a separate analysis of the ratings, it can be seen that the most


appreciated quality by the first group was “Summarized the contents well” while “Included all

participants in the dialogue” was the one highly valued by the participants in the second

NSD. In any case, ratings were always quite high, with values between 1 and 2

corresponding to “I agree very much” and “I rather agree”, what is a very strong indication of

the high level of appraisal reached by the participants on the qualities of the facilitator

intervention.

To reinforce the argument of the relevance of the different composition and attitudes

between the two NSD groups, it is worth to note the higher appraisal reached by items 2, 4,

6 and 7 in the second group. These items relate quite significantly to the dynamics of the

dialogue evaluation and the atmosphere surrounding it. As has been continuously stated,

NSD1 was largely less fluent and developed through a less friendly atmosphere. This may

be reason why items like “Included all participants in the dialogue”, “Promoted a good

atmosphere” as well as “Kept an overview” and “Focused the discussion on the issue” have

been less valued by the participants of the first dialogue. These results offer, in our opinion,

support for arguing on the validity of the analysis based on a qualitative, quasi-ethnologic,

approach.

Table 9: Assessment of the facilitator’s characteristics

The facilitator was...

I agr

ee v

ery

muc

h

I rat

her

agre

e

I rat

her

don’

t

agre

e

I don

’t ag

ree

Mea

n

Std

. Dev

iatio

n

Overall I was satisfied with the moderation11

(2/9)8

(6/2)1,42

(1,75/1,18)0,51

(0,46/0,40)

1. Well prepared14

(5/9)5

(3/2)1,26

(1,38/1,18)0,45

(0,52/0,40)

2. Patient12

(7/5)7

(1/6)1,37

(1,13/1,55)0,50

(0,35/0,52)

3. Fair11

(4/7)8

(4/4)1,42

(1,50/1,36)0,51

(0,53/0,50)

4. Interested13

(5/8)6

(3/3)1,32

(1,38/1,27)0,48

(0,52/0,47)

5. Competent in respect to content11

(4/7)8

(4/4)1,42

(1,50/1,36)0,51

(0,53/0,50)

6. Congenial15

(6/9)4

(2/2)1,21

(1,25/1,18)0,42

(0,46/0,40)

7. Neutral10

(4/6)9

(4/5)1,47

(1,50/1,45)0,51

(0,53/0,52)

8. Confident12

(6/6)7

(2/5)1,37

(1,25/1,45)0,50

(0,46/0,52)

9. Dominant2

(0/2)11

(4/7)6

(4/2)3,21

(3,50/3,00)0,63

(0,53/0,63)



With respect to the opinion on the personal characteristics of the facilitator, the participants

valued more positively “Congenial” followed by “Well prepared”. The scores varied between

1,21 and 1,47.

Both groups shared a high positive opinion on the characteristics of the facilitator (see Table

9) where the mean scores for the positive aspects ranged between 1,21 and 1,27, while the

negative character was commonly receiving a rejection. It must be stressed that in this

evaluation of the personal characteristics of the facilitator, items linked to the human values

and behaviour of the facilitator like “Patient”, “Confident” and “Dominant” (this one as

assessed by the level of rejection) received better appraisals from the participants of the first

dialogue. This may reflect the appreciation of the “more difficult” participants for the capacity

of the facilitator to pass over the difficulties posed by themselves and drive the exercise to an

end. Nevertheless, the most positive declaration emerged from participants in dialogue 2.

Some examples are:

• NSD2, participant 5: “Como positivo, sin duda, el papel del moderador que lo hizo de una manera creo que

brillante y cauta al mismo tiempo, y respetuosa en general, me pareció el conductor del debate”

Summary: “As positive, without any doubt, the role of the moderator who performed the work both

brilliantly and carefully, being also able to respect the divergences. He was a real driver of the debate”.

• NSD2, participant 8: “Pues, una solidaridad entre todos los participantes, y quizás el ambiente que surgió

durante... que fue como... no sé, muy distendido y amigable entre todos. Y la moderación muy bien llevada”

Summary: “important points: solidarity, friendly and smooth ambiance. A very well done work by the

facilitator”.

The most frequent comment in the open questions about the moderation of the dialogue

dealt with the capability of the moderator to integrate all the participants' opinions. On the

other hand, some participants expressed criticism about the slowness during the

development of the dialogue. Some persons thought that the dialogue was too slow in some

parts.

• NSD1, expost questionnaire: “Ha sido un poco lento en determinados momentos. El ritmo podía haber sido

más dinámico”

• Summary: “too slow in some moments. The rythm should have been more dynamic”.

• NSD1, expost questionnaire: “Ha habido un momento en el que se produjo un atasco en el discurso, se

reiteraba sobre el mismo punto y no se avanzaba”

• Summary: “There have been moments of dialogue blockage, points become components of a

reiterative dialogue and there were no advances”.


The second dialogue was more fluent than the first one. All participants had the same level

of knowledge about xenotransplantation, so they did not feel uncomfortable while expressing

their opinions.

In the open question about moderation, the most positive comment was about the ability of

the moderator to integrate the different thoughts of the participants and to drive the dialogue

to a common point. The audience valued positively the opportunity to express their own

points of view, despite the wide diversity of the group. These opinions from the

questionnaires support such arguments:

• NSD2, expost questionnaire: “Haber llegado a un consenso tan rápido, con personas de diferentes

profesiones”

Summary: “To have reached a fast consensus with so many different professions”.

• NSD2, expost questionnaire: “Integración de todos los miembros del diálogo y marcar las conclusiones”

Summary: “Integration of all members of the dialogue and ability to draw conclusions”.

• NSD2, expost questionnaire: “Facilita, de forma estructurada, la puesta en común de varias opiniones, y partir

de una experiencia personal, llegar a conclusiones sobre un tema tan candente”

Summary: “It makes easy, in a structured way the share of common opinions, and to start from a

personal experiences to arrive to conclusions on such a hot topic”.

On the other hand, lack of time was one the negative points in the development of the

second Neo Socratic dialogue. This lack of time limited the opportunity to discuss some

issues in depth. The participants also asked for higher personal implication of the moderator

in the issue of xenotransplantation. This implication could have facilitated, in their opinion,

the comprehension of some concepts exposed in the dialogue as participants said. The lack

of time is reflected in some quotations from the questionnaires:

• NSD2, expost questionnaire: “Creo que la duración del evento debería ser mayor para poder dialogar sobre

cuestiones que han surgido y no se han podido tocar”

Summary: “I believe that the event should last longer in order to make possible the dialogue on issues

raised which could not be discussed”.

• NSD2, expost questionnaire: “Cuando llegábamos a un tema particularmente interesante, como había que

abarcar tanto es tan poco tiempo, había que pasar el tema por encima”

Summary: “When reaching particularly relevant topic, owing to the many issues to deal with in quite

short time, it was not possible to touch on it in depth”.


5. Output

5.1 Which results did the Neo Socratic Dialogue have?

As an additional outcome of the satisfaction attained by the participants in the NSD, they

were asked about their thought on the possible relevance of the dialogue results for their

personal or professional career and activity. The results are shown in Table 10.

Table 10: Assessment of the usefulness of the results of the NSD

Ver

y us

eful

Rat

her

usef

ul

Rat

her

not

usef

ul

Not

use

ful

Mis

sing

dat

a

Mea

n

Std

. Dev

i atio

n

If you think about theresults, the NSDparticularly had concerningXTP - To what extent doyou think are these resultsuseful for your professionalor voluntary work?

3(0/3)

14(7/7)

2(1/1)

0(0/0)

0(0/0)

1,95(2,13/1,82)

0,52(0,35/0,60)


About the 90% of the sum of participants in the two dialogues stated that the results were

seemingly “Very useful” and “Rather useful”, living rise to a mean of 1,95.

The participants attending the second NSD appeared as being more satisfied (mean 1,82), a

figure closer to the option “Very useful”. The attendants to the first NSD expressed opinions

which averaged 2,13. It is also worth of noting that the assessment of the participants in the

first dialogue emerged as more homogeneous as judged from its lower typical deviation.

The first dialogue finished with two judgements about decisions in a risk environment. The

judgements, approximately, were:

• "A risk must not be assumed, although it only affects a reduced number of people, if its

consequences are very serious".

• "The ethical acceptability of a risk will depend on its probability and the seriousness of

the consequences that the decision implies".

These are the main conclusions, almost unanimously adopted by the participants.

The second dialogue ended by agreeing on two judgements in relation to the decision

making process in environments and situations under risk. The judgements were the

following:


• "We can assume those risks whose benefits, for ourselves and for third parties

dominate, are greater than any possible disadvantages or damages"

• "We can assume those risks in which the benefits are clearly surpassing the possible

risks and there is a reasonable level of knowledge about the relationships between risk

and benefit".

Both judgements were the result of the opinions and contributions of all participants, though

the latter of the two was the most appreciated.

5.2 Was consensus reached? If not, why not?

Some of the participants subscribed to one of the two phrases given in 5.1., some of them to

the other. It was not possible to reach complete consensus. In addition, each participant

expressed slightly different views.

The most problematic issue for reaching consensus was ethics. Some of the participants

were reluctant to include ethics as one of the decisive factors for decision making under risk.

Ethics depends to a very high degree on each individual, which is why some participants did

not think it was a good idea to include it in the two judgements given in 5.1.

The following quotations of NSD1 show comments on the subjectivity associated to the

process of taking decisions on issues where there are emerging risks for individuals:

“Un poco vuelvo al tema de la subjetividad y la dificultad. Quiero decir que cuando realmente se intenta o, sobre

todo yo intento pensar, quizás estoy muy mediatizado porque lógicamente hasta ahora... llevo participando, llevo ya

muchos años participando en reuniones discutiendo estos temas a diversos niveles, y un poco la primera

conclusión a la que todo el mundo llega es que los riesgos individuales es una decisión de la libertad de la persona,

es decir, todo lo que sea propio, hay que garantizar que esa persona tenga toda la información sobre, lo que

decíamos información disponible sobre cuáles son sus potenciales riesgos, qué le puede pasar, qué beneficios va a

tocar, etc., y ahí la persona tiene un derecho, finalmente es la que va a tener que decidir si acepta o no acepta,

suponiendo que la información y lo que se le informe a él, y además está muy claro que no tiene que ser... que es

una información que tienen que dar no las personas que vayan a realizar el xenotrasplante, porque es una

información subjetiva, y todos los que somos médicos sabemos que por mucha información, tú puedes llegar a

influir claramente en la decisión que tome un paciente en función de cómo le plantees un problema, o sea, quiero

decir que tiene que ser dada incluso por personas ajenas, tienen que participar claramente personas ajenas a lo

que es el campo éste, para que la opinión y la decisión del paciente sea lo más libre posible y, por descontado, que

en el último momento el paciente tiene derecho a renunciar siempre de participar en una situación de este tipo”

Summary: Subjectivity and difficulty are the main topics. Individual risks are decisions based on the

freedom of the individual. The patient’s decision must be influenced by advices provided by persons

external to the issue”.

In the second dialogue, the issue of taking decision was also touched upon, an issue which

depends on the individual values and may vary from one person to another one:


-Sí... pero el que los evalúa soy yo, o sea, ellos aportan más datos, más información a la hora de evaluar esta

razonabilidad, ellos aportan más información, información de cómo a ellos les afecta, cómo a ellos les podría

afectar, cómo... pero al final, el que lo evalúa es uno, el que toma la decisión.

- Es decir... es curioso como después de haber hablado y no hemos tocado ese tema del proceso decisional, que

era otro tema que se podía tocar, por ejemplo, por lo que está escrito allí, uno podría también entender que los

otros sí, es decir, los otros que trabajan contigo, te han dado más datos, también tu familia, en el caso de la pareja

uno podría también pensar “bueno, yo te he expuesto la situación, hemos hablado, hemos considerado y he

pensado teniendo en cuenta esto...”, es decir, un proceso decisional en que va a tener un papel importante también

otras personas. Uno también, lo puede pensar así.

(…)

-Yo insisto que los criterios que tienen a su alcance los ponen en conocimiento de la persona al ser trasplantada, y

de la familia directa, eso de “tú sí ó tú no”, yo creo que está bien claro, si no lo haces te mueres y si lo haces

también te puedes morir...

-Pero siempre es la persona quien lo decide.

Summary: Data are given by others but the final decision rests on the person directly involved.

In the second dialogue, all of the participants gave support to both of the phrases given

above, even though some of them showed certain differences of opinion.

The most problematic issue here was “reasonable risk”. Some participants were doubtful

about when a risk could be qualified as reasonable, given that this is a very subjective

concept and depends entirely on each individual.

5.3. Was it possible to mark dissent?

There were no marked dissensions in both dialogues with a few exceptions related to small

nuances introduced by the participants to the final judgements. To enter into more details

about the shades see sections 4.1 and 4.2.

5.4. Was it possible to formulate policy options?

Some of the participants of the first Neo Socratic dialogue had difficulties in applying the

judgements to the xenotransplantation case, when it came to defining a line of action with

respect to this technology. The following quotations reflect a part in the NSD1 when a

participant expressed doubts about the possibility to apply judgements to the case of

xenotransplants:

Sí, sí, te comento. Para que se haya llegado al final sí creo que puede tener algo más que ver con el tema de los

xenotrasplantes, yo lo que no veo tanto, quizás es mi percepción y quizá soy yo, es la conexión entre el ejemplo

principal... o sea, hay algún punto que sí, pero hay otra serie de puntos que no los veo que se aproximen a esto,

sinceramente no veo tanto la conexión entre a lo que queríamos llegar y el ejemplo primero ¿sabes?, o sea, el

primer ejemplo es que lo veo como el caso que pusimos práctico, como que las cosas no han quedado tan


concretas, aquí yo creo que ya se ha concretado algo más, pero ahí, las definiciones o los puntos que se han dado,

o a las conclusiones que se han llegado las veo como más dispersas...

¿Los juicios?

Esa es mi opinión que puede ser completamente equivocada, pero es así como lo percibo. Creo que estamos

respondiendo a la pregunta, desde mi punto de vista, con respuestas tampoco concretas, demasiado... con

connotaciones muy diferentes para cada uno de nosotros, entonces es un poco difícil, desde mi punto de vista,

concretar, porque el significado que yo pueda dar a una palabra o a una frase igual es distinto al que otra persona

pueda tener, entonces a mí me parece un poco complicado llegar a tener unas respuestas tan concretas, ahí ya

veo cosas más concretas, aunque no estén acotadas, aunque no sean... pero sí que ya entran dentro de algo que

sí se puede “tangibilizar” más, que es más tangible.

Es más una consideración en torno a diálogo mismo y a lo que se ha dicho en el diálogo más que a los

xenotrasplantes ¿no?, más bien tu punto de vista...

Sí, es como yo lo percibo pero que puedo estar completamente equivocada, no lo sé, es como yo lo estoy

percibiendo o como a mí me está llegando, que lo veo... no sé, estoy un poco perdida en el sentido de que creo

que las respuestas que se dan son demasiado genéricas para mí personalmente, hasta el final no están

respondiendo demasiado a la pregunta, las del ejemplo.

¿Los juicios?

Sí, los juicios, y después trasladarlos al ejemplo que el caso que estamos viendo que no lo veo tan acorde, o tan

fácilmente trasladable.

(Summary: -From my personal perception, likely due to my limitations, I do not see the link between theexample, in broad terms, and the final outcome.

-Do you mean the judgements?

-This is my point of view. The answer to a main question with fuzzy answers, different meanings andcontexts makes difficult to arrive to concrete a question.

-Your opinion concerns to the dialogue in general and to the specific points of the dialogue instead of thespecific issue of xenotransplantation.

-Yes, this is my personal impression. The answers are too broad for entering into the specific issue.

-Judgements?

-Yes, how to translate judgements to the case we are dealing with).

Let’s analyse the judgements, as they apply to xenotransplants, one by one:

• “A risk must not be assumed, although it only affects a reduced number of people, if its

c o n s e q u e n c e s a r e v e r y s e r i o u s ”

With respect to infections, in the case of xenotransplants, the number of potentially

affected people could be very high, depending on the seriousness of the infection. The

affected parts could be the patient him or herself, but they also could be all of society, in

c a s e o f a n e p i d e m i c .

Up to now, it is still unclear how serious a transmitted infection could be. All of the

experiments done in order to determine the risk of infection have shown the absence of

transmission of illnesses. The medical doctors present in the dialogue reminded the

audience that for some time now implants of cardiac valves taken from pigs have been

used without any problem in terms of infections.


• “The ethical acceptability of a risk will depend on its probability and the seriousness of

t h e c o n s e q u e n c e s t h a t t h e d e c i s i o n i m p l i e s ”

Here, the probability of infections in the case of xenotransplants is unknown. This means

that the judgement can only be applied to transplants of pig organs.

In the second dialogue, there was more time for transferring the judgements selected by the

participants to the xenotransplant case. In the first dialogue, there was almost no time to do

this, which is why in the second dialogue, more time was given to this question.

• "We can assume those risks whose benefits, for ourselves and for third parties

dominate, are greater than any possible disadvantages or damages"

The benefits from xenotransplants are for the patient who receives an organ, because

this operation might save their life. However, there are no direct benefits for others, like

f r i e n d s , f a m i l y o r t h e r e s t o f s o c i e t y.

Currently, there are no data about the probability of infections, which could lead to the

conclusion that –in principle– there are only benefits. On the other hand, a majority of

researcher is convinced that there is a possibility of infection, or even of infections

t u r n i n g e p i d e m i c a n d a ff e c t i n g a l l o f s o c i e t y.

In that latter case, the possible damage would be higher than any benefit, given that the

benefits are for the treated patient only.

• "We can assume those risks in which the benefits are clearly surpassing the possible

risks and there is a reasonable level of knowledge about the relationship between risk

a n d b e n e f i t " .

This judgement is similar to the preceding one, which means it presents similar

limitations. It is difficult to establish a risk-benefit relationship which could serve as basis

for decision making, given that the exact probabilities of epidemic infections as a result

o f x e n o t r a n s p l a n t s a r e s t i l l u n k n o w n .

The participants were divided on the issue of a decision about proceeding with a

xenotransplant or not. Some believe this is up to the patient, while others said that this

d e c i s i o n m u s t b e t a k e n b y a g r o u p o f e x p e r t s .

Within this group of experts, people not connected to xenotransplantation research

would have to be included, in order to make sure that the opinion of individuals which do

not have any direct interest in xenotransplants counts in the moment of taking a

decision.


5.5. Which experiences did participants make?

In the ex-post questionnaire, there is one question about the conduct of the participants as a

group and which refers to the common experience during the development of the dialogue.

Table 11 shows the results about the group’s activities.

Table 11: Assessment of the group’s activities

The group

I agr

ee v

ery

muc

h

I rat

her

agre

e

I rat

her

don’

t

agre

e

I don

’t ag

ree

Mea

n

Std

. Dev

iatio

n

1. Allowed everybody to speak18

(7/11)1

(1/0)1,05

(1,13/1,00)0,23

(0,35/0)

2. Allowed different opinions11

(3/8)8

(5/3)1,42

(1,63/1,27)0,51

(0,52/0,47)

3. Had a good atmosphere18

(7/11)1

(1/0)1,05

(1,13/1,00)0,23

(0,35/0)

4. Cooperated well10

(3/7)8

(5/3)1

(0/1)1,53

(1,63/1,45)0,61

(0,52/0,69)

5. All in all I was satisfied with thegroup

11(3/8)

8(5/3)

1,42(1,63/1,27)

0,51(0,52/0,47)

6. Worked concentrated8

(3/5)10

(4/6)1

(1/0)1,63

(1,75/1,55)0,60

(0,71/0,52)

7. Led a high level conversation4

(0/4)14

(7/7)1

(1/0)1,84

(2,13/1,64)0,50

(0,35/0,50)

8. Worked to the point11

(5/6)8

(3/5)1,42

(1,38/1,45)0,51

(0,52/0,52)

9. Remained the overview9

(3/6)10

(5/5)1,53

(1,63/1,45)0,51

(0,52/0,52)

10. Reached at acceptable results9

(2/7)7

(4/3)3

(2/1)1,68

(2,00/1,45)0,75

(0,76/0,69)


Items like “Allowed everybody to speak” and “Had a good atmosphere” were the most valued

activities, while item “Led a high level conversation” received the lowest appreciation. In any

case, all assessments were quite close, ranging between 1 and 2, which correspond to “I

agree very much” and “I rather agree”.

With regard to the global assessment corresponding to statement number 5: “All in all I was

satisfied with the group”, important differences are seen between the two dialogues. In the

first dialogue only 38% of the participants gave the maximum rating, while 73% of the

participants in the second NSD gave this rate. There seems that the members of the second

NSD group reached a higher degree of self satisfaction in conducting the exercise.

In this same context and on the grounds expressed repeatedly on the more favourable

attitude shown by the participants in the second dialogue, items “Allowed different opinions”,


“All in all I was satisfied with the group” and “Reached at acceptable results” were better

assessed by the participants: a more fluent dialogue and a greater true devoted to the

transfer phase may have been underlying the good appraisal on these items given by the

group of NSD2.

Table 12: Assessment of group characteristics

The group was

I agr

ee v

ery

muc

h

I rat

her

agre

e

I rat

her

don’

t

agre

e

I don

’t ag

ree

Mea

n

Std

. Dev

iatio

n

1. Interested12

(2/10)7

(6/1)1,37

(1,75/1,09)0,50

(0,46/0,30)

2. Open14

(6/8)5

(2/3)1,26

(1,25/1,27)0,45

(0,46/0,47)

3. Fair16

(6/10)3

(2/1)1,16

(1,25/1,09)0,37

(0,46/0,30)

4. Competent10

(4/6)9

(4/5)1,47

(1,50/1,45)0,51

(0,53/0,52)

5. Well composed6

(1/5)10

(6/4)3

(1/2)1,84

(2,00/1,73)0,69

(0,53/0,79)

6. Heterogeneous9

(2/7)9

(5/4)1

(1/0)1,58

(1,88/1,36)0,61

(0,64/0,50)

7. Pushy5

(1/4)12

(6/6)2

(1/1)1,84

(2,00/1,73)0,60

(0,53/0,65)

(Source: CSIC-survey 2003)

Table 12 gathers the opinions of the participants about the personal characteristics of both

groups in the NSD. The most appreciated quality was “Fair” followed by “Open”. The last

positions belonged to “Well composed” and “Pushy”, both with the same numerical value.

There are, nevertheless, significant differences between the two NSD in some

characteristics. Option “Interested” received a mean value of 1,75 in the first NSD and 1,09

in the second. The second group was self-assessed as being more interested in the exercise

performance. Similar results were obtained with respect to options “Well composed”, and

“Heterogeneus”. All these items received better appraisals from the members of the second

NSD group.

We argue again on the differences in the composition of both groups to explain the

evaluation data. With regard to item “Pushy”, it should be indicated that the evaluation on

this item has to be discarded because a poor translation to it in Spanish. It was translated

according to a meaning closer to ambitions (“Demanding”) than to “Agressive”.


The group thought the conduct of the participants was productive. The most extended

comment in the open questions of the questionnaire was that an open and tolerant

environment was created which allowed respect for all ideas, a situation which is often

impossible to achieve in conventional debates.

In general, the satisfaction with group conduct was higher in the second dialogue than in the

first one. In the open question on group conduct, the issue most mentioned was the

possibility of formulating common judgements agreed on by everyone, in spite of the high

intellectual and professional diversity of the group.

Another important point was the environment of respect and tolerance maintained

throughout the meetings, during which all of the opinions could be heard and included in the

final conclusions.

Summing up, we can observe that the second dialogue worked more fluently than the first

one, especially since the moderator needed to put in less effort in animating the participants

to express their opinions.

The responses to the question on satisfaction with the group in the ex-post questionnaire

and in the telephone interviews give rise to the following items:

• NSD2, expost questionnaire: “He tenido oportunidad de conocer a distintas personas”

“I have had the opportunity to meet a variety of persons”.

• NSD2, expost questionnaire: “Existía gran variedad de opiniones y personas, lo que ha permitido

enriquecernos como personas. Al final se ha llegado a puntos clave entre todos, de forma constructiva”

“There was a great variety of opinions and individuals, what has made us to get more rich as

human beings. To the end, we have achieved a constructive result on some key points with the

involvement of all”.

• NSD2, expost questionnaire: “Ha permitido un excelente ambiente de trabajo y ha dado lugar a la

búsqueda de consenso mediante una actitud abierta y flexible de todos los miembros”

“The dialogue has allowed a very good working ambiance and to the search of a consensus by

means of an open and flexible attitude of all the members”.

• NSD2, expost questionnaire: “Se expresaron las ideas libremente sin que nadie se sintiese atacado

personalmente. La participación ha sido más alta de lo esperado, siendo el número de participantes

idóneo”

“Ideas were expressed with freedom, nobody could feel being attacked personally. Active

participation was higher than expected and the number of participants deemed suitable”.


5.6. Were their expectations/motives/goals fulfilled?

All of the participants in the dialogue assure that it fulfilled most or all of their expectations,

according to the respective question from the questionnaire.

Data on the question about the general expectations of the NSD is collected in Table 13, see

below. The assessment on this point was pretty satisfactory as about 63% of the participants

scored their expectations as having been “Surpassed” or “Met”, yielding an average of 2,16.

It is important to point out that no one of the participants singled out the option “Rather did

not met” or “Did not met”, an indication of the degree of satisfaction of both dialogue

participants with respect to the results.

As can be seen from Table 13, the members of the second NSD expressed a better

appreciation of the experience (mean 1,82) than those intervening in the first NSD (mean

2,63). The first value runs close to “Met” option, while the mean value of the first NSD

approaches the option “Rather met”. With respect to t he typical deviation there are not

significant differences between the two, though it was slightly higher in the second NSD.

The better outcomes on the expectations of the opinions of NSD2 do seem to fit with all the

previous arguments on the composition characteristics of the groups as shown in section

3.1.

Table 13: Realization of expectations

Sur

pass

ed

Met

Rat

her

met

Rat

her

did

not

mee

t

Did

not

mee

t

Mea

n

Std

. Dev

iatio

n

Altogether the NSDsurpassed, met, rather met,rather did not meet, did notmeet my expectations

4(0/4)

8(3/5)

7(5/2)

0(0/0)

0(0/0)

2,16(2,63/1,82)

0,76(0,52/0,75)


5.6.1. How do participants explain their assessment?

In order to get a detailed picture about peoples’ experiences we asked them at the end of the

NSD several questions what they gained from the dialogue, as Table 14 shows. These

questions were related to the items of expectations used in the ex-ante questionnaire.


Table 14: Assessment of the outcomes of the NSD

The NSD: 1= I

agre

eve

ry 2 3 4

5 =

Ido

n’t

Mea

n

Std

.D

evia

tion

1. Allowed me, to get to know adifferent form of discussion

155/10

43/1

1,21(1,38/1,09)

0,42(0,52/0,30)

2. Allowed a dialogue equal to allparticipants

177/10

21/1

1,11(1,13/1,09)

0,32(0,35/0,30)

3. Provided an open atmosphere12

2/10

76/1

1,37(1,75/1,09)

0,50(0,46/0,30)

4. Conveyed the instrument NSD18

7/11

11/0

1,05(1,13/1,00)

0,23(0,35/0)

5. Showed, that other participantshad also an interest in the topic

83/5

105/5

10/1

1,63(1,63/1,64)

0,60(0,52/0,67)

6. Allowed a high level conversation5

1/4

125/7

22/0

1,84(2,13/1,64)

0,60(0,64/0,50)

7. Contributed to learning to knowother people and their standpoint

167/9

31/2

1,16(1,13/1,18)

0,37(0,35/0,40)

8. Provided a clearly structureddiscussion

71/6

94/5

22/0

11/0

1,84(2,38/1,45)

0,83(0,92/0,52)

9. Provided time to think about anethical problem

94/5

84/4

10/1

10/1

1,68(1,50/1,82)

0,82(0,53/0,98)

10. Allowed that other participantsreferred to my arguments

41/3

84/4

63/3

10/1

2,23(2,25/2,18)

0,85(0,71/0,98)

11. Allowed that other participantslisten to me and try to understand

73/4

104/6

21/1

1,74(1,75/1,73)

0,65(0,71/0,65)

12. Brought an exciting discussion withregards to content

61/5

104/6

22/0

11/0

1,89(2,38/1,55)

0,81(0,92/0,52)

13. Brought about tolerance to myopinion

115/6

62/4

11/0

10/1

1,58(1,50/1,64)

0,84(0,76/0,92)

14. Helped me to better understandother participants’ position

72/5

116/5

10/1

1,68(1,75/1,64)

0,58(0,46/0,67)

15. Helped my to develop mycommunicative skills

72/5

95/4

21/1

10/1

1,84(1,88/1,82)

0,58(0,64/0,98)

16. Allowed me to convince others withmy point of view

52/3

95/4

51/4

3,00(2,88/3,09)

0,75(0,64/0,83)

17. Gave me new insights into theethics of XTP

62/4

52/3

42/2

42/2

2,32(2,50/2,18)

1,16(1,20/1,17)


The NSD: 1= I

agre

eve

ry 2 3 4

5 =

Ido

n’t

Mea

n

Std

.D

evia

tion

18. Gave a clear answer, how to dealwith the problem XTP

30/3

32/1

84/4

52/3

2,79(3,00/2,64)

1,03(0,76/1,21)

19. Contributed to a clarification of myown standpoint

31/2

52/3

74/3

41/3

2,63(2,63/2,64)

1,01(0,92/1,21)

20. Provided new information aboutXTP

42/2

63/3

21/1

72/5

2,63(2,38/2,82)

1,01(1,19/1,25)

21. Created consensus about XTP2

0/2

105/5

42/2

31/2

2,42(2,50/2,36)

0,90(0,76/1,03)

22. Brought about a change in myposition towards the ethics of XTP

20/2

31/2

63/3

84/4

3,05(3,38/2,82)

1,03(0,74/1,17)


According to Table 14, the most valued outcome from the two dialogues was the option

“Conveyed the instrument of NSD”, followed by “Allowed a dialogue equal to all participants”

and “Contributed to learning, to know other people and their standpoint”. The less valued

outcomes were: “Brought about a change in my position towards the ethics of XTP”,

“Allowed me to convince others with my point of view” and “Gave a clear answer, how to deal

with the problem XTP”.

But once more, there exist significant differences between both dialogues when looked

separately. The second group assessed more positively the “Provided an open atmosphere”

outcome. Same situation is observed with respect to the following options: “Allowed a high

level conversation”, “Provided a clearly structured discussion”, “Brought an exciting

discussion with regards to the content” and “Brought about a change in my position towards

the ethics of XTP”. The second dialogue group gave higher values to these categories that

the former NSD group with significant differences between the two. On the other hand, there

were no significant differences in rating in the remaining categories.

In summary, it can be concluded from Table 14 data that the participants in the second NSD

were more satisfied with the outcomes.

Some quotations from the telephone interviews serve to illustrate that several participants

did not attend the dialogue with previous expectations as they had very poor knowledge on

the type of exercise they were going to be involved:

• NSD1, participant 1, xtp researcher: “Bueno, sinceramente no me había hecho ninguna expectativa, pero

como no había participado nunca en lo que era una cosa de este tipo, a los que venimos un poco del

campo de la ciencia o de las cosas mucho más concretas es un tipo de forma de trabajar seguramente

distinta, y bueno la verdad es que no iba con ningún tipo de expectativa, ni con ningún... no le pedí, no


sé, no esperaba nada en concreto, iba casi más con la idea de aprender y de ver, que no con una idea de

decir... pensaba concurrir o no pensaba hacerlo”

Summary: “I was presuposing a different type of work to the classical research activity. But I did

not have a preconceived position: to learn and see”.

• NSD1, participant 5, interested in biotechnology: “No, no tenía ninguna hecha sobre el diálogo realmente,

porque tampoco tenía ninguna idea preconcebida. No, realmente no fue con ninguna idea... no esperaba

sacar nada... no es como si vas a curso, o vas... sino que iba con la idea de... bueno, voy a participar, si

puedo aportar algo bien, si no pues nada, ¿sabes?, pero no iba con la idea de yo percibir nada a cambio”

Summary: “I did not attend with a previous conception. I was not expecting any thing special

but… to participate without lookinf forward to any particular benefit”.

• NSD2, participant 3, interested in ethical issues of biotechnology: “Yo no iba con ninguna idea

preconcebida y la verdad es que iba expectante, ante lo que realmente lo que podía ser el diálogo, y

eso... discursivo y como método para hallar, me pareció... para plantear soluciones a problemas, no sé si

es eso lo que busca, o para simplemente debatir sobre ello, me pareció interesante”

Summary: “I was not holding any particular expectations but I was eager to follow and intervene

into a method based on dialogue and aiming to find something…”.

• NSD2, participant 5, doctor and interested in developments of biotechnology: “No, me parece que cubrió

bastantes expectativas. Me pareció que era un método para mí en cierto modo nuevo de abordar un

problema, creo que el moderador lo condujo con bastante rigor, que en general el nivel de los

participantes, aunque era un poco heterogéneo, se adaptaba bastante a la temática propuesta, y me

pareció que aportaba una nueva forma de discutir o de repensar los problemas”

Summary: “I found NSD as a new method to approach conflicting issues with a rigourous driving

of the debate and an active and well adapted participation”.

Table 15 gives an overview of the relationships between expectations and experiences.


Table 15: Comparison of expectations about and experiences with the NSD

Mean of ExpectationsTotal

(NSD1/NSD 2)

Mean of ExperiencesTotal

(NSD1/NSD 2)

Interest in the topic from other participants1,84

(2,00/1,73)1,63

(1,63/1,64)

An exciting discussion with regards tocontent

1,42(1,50/1,36)

1,89(2,38/1,55)

To get to know a different form of discussion1,26

(1,13/1,36)1,21

(1,38/1,09)

To learn to know other people and theirstandpoint

1,53(1,50/1,55)

1,16(1,13/1,18)

A dialogue equal to all participants1,47

(1,75/1,27)1,11

(1,13/1,09)

An open atmosphere1,53

(1,75/1,36)1,37

(1,75/1,09)

To learn to know the NSD1,47

(1,63/1,36)1,05

(1,13/1,00)

New insights into the ethics of XTP1,58

(1,63/1,55)2,32

(2,50/2,18)

A clearly structured discussion2,05

(2,25/1,91)1,84

(2,38/1,55)

To have a high level conversation2,11

(2,25/2,00)1,84

(2,13/1,64)

To better understand other participants’position

1,42(1,71/1,27)

1,68(1,75/1,64)

Time to think about an ethical problem2,74

(2,63/2,82)1,68

(1,50/1,82)

To develop my communicative skills2,47

(2,38/2,55)1,84

(1,88/1,82)

New information about XTP2,58

(2,13/2,91)2,63

(2,38/2,82)

Tolerance to my opinion2,16

(2,25/2,09)1,58

(1,50/1,64)

That other participants refer to myarguments

3,63(3,75/3,55)

2,23(2,25/2,18)

To clarify my own standpoint2,37

(2,50/2,27)2,63

(2,63/2,64)

That other participants listen to me and try tounderstand

2,89(2,75/3,00)

1,74(1,75/1,73)

To reach at a consensus concerning XTP2,58

(2,63/2,55)2,42

(2,50/2,36)

To change my position towards XTP3,05

(3,00/3,09)3,05

(3,38/2,82)

A clear answer, how to deal with the problemXTP

2,37(2,38/2,36)

2,79(3,00/2,64)

To convince others with my point of view3,58

(3,50/3,64)3,00

(2,89/3,09)

(Source CSIC-survey 2003)


Table 16 shows a cross between expectations as collected in Table 7 and the experiences

obtained as gathered in Table 14. Expectations have been considered as high when the

mean was between 1 and 2, 5. Experiences have been considered as high when the mean

value was between 1 and 2.

Table 16: Relation between expectations about and experiences with NSD

HIGH VALUED EXPERIENCES LOW VALUED EXPERIENCES

HIG

H E

XP

EC

TAT

ION

S

Interest in the topic from otherparticipants


To get to know a different form ofdiscussion



An open atmosphere

To learn to know the NSD








A clear answer, how to deal with the problemof XTP

LO

WE

XP

EC

TAT

ION

S


That other participants listen to me andtry to understand






It can be stated that the optimal situation corresponds to those experiences placed in the

crosses “High expectations”-“High valued experiences” and “Low expectations”-“High valued

experiences”. From the 22 expectations and experiences assessed, 12 and two appeared

respectively in the first and second quartile (left side), with only eight registered in the right

side (three in the third quartile, five in the forth one). These eight reflect the less satisfactory

situations, as they were not assessed positively in the evaluation of experiences.


Table 17: Relation between expectations about and experiences with NSD1


HIG

H E

XP

EC

TAT

ION

S





An open atmosphere







An exciting discussion with regards to content




LO

WE

XP

EC

T AT

ION

S








When the two dialogues are taken separately, some differences can be observed. As could

be foreseen from all previous analysis, the first NSD reveals a less satisfactory pattern. Only

11 experiences emerge as high valued ones (14 in the total of both dialogues), supporting

the situation observed for this dialogue as deduced from the ex-post questionnaire.


Table 18: Relation between expectations about and experiences with NSD2


HIG

H E

XP

EC

TAT

ION

S






An open atmosphere









LO

WE

XP

EC

TAT

ION

S









As may be expected, the results for the NSD2 (see Table 18) do not show marked

differences with the total of the two NSD. Experiences included in the quartiles 1 and 2

amount to 14, identical value to the gathering of both dialogues results.

5.6.2. Participants´ overall assessment

In order to obtain an overall of the participants on the exercise, they were asked to identify it

with any of the different levels: Excellent, Fair, Satisfactory, Sufficient and Unsatisfactory.

Results are shown in Table 19.

The mean for the two NSD amounts to 1,89, a value near to the “Fair” level. A high majority

of the participants (89%) qualified the experience as “Excellent” or “Fair”, a very positive

result.


As in many other assessments, the trend for a more positive appraisal for the second

dialogue group is maintained in the overall assessment. The mean for the first NSD was 2,25

and for the second NSD was 1,64. The first value matches with an option between “Fair” and

“Satisfactory”, while the second one places between “Excellent” and “Fair”.

Table 19: Assessment by school gradesE

xcel

lent

Fai

r

Sat

isfa

ctor

y

Suf

ficie

nt

Uns

atis

fact

ory

Mea

n

Std

. Dev

iatio

n

Altogether I assignto the event thefollowing schoolgrade

4(0/4)

13(6/7)

2(2/0)

0(0/0)

0(0/0)

1,89(2,25/1,64)

0,57(0,46/0,50)


The participants were also asked if they would recommend the participation in such type of

exercise to their colleagues, and the response is a high “Yes” (see Table 20).

In broad terms, all the participants in the NSD would recommend the dialogue to their

colleagues. The mean value was 1,21, a store very closet o the most positive option “Very

much recommend”.

In spite of this overall positive result, the trend of the second NSD being more positive is

kept. Its mean amounts to 1,09, almost exactly matching with the highest appraisal, while in

the first the mean was 1,38. In any case, this clear positive results constitutes one of the

mean assets of the Neo Socratic Dialogue experience in Spain.

Table 20: Willingness to recommend the NSD to colleagues

Ver

y m

uch

reco

mm

end

Rat

her

reco

mm

end

Rat

her

not

reco

mm

end

Not

reco

mm

end

Mea

n

Std

. Dev

i atio

n

Would you recommend suchan event to an interestedcolleague?

15(5/10)

4(3/1)

0(0/0)

0(0/0)

1,21(1,38/1,09)

0,42(0,52/0,30)



5.7. Was it possible to disseminate the results of the Neo SocraticDialogue into a wider discussion?

This document will be mailed to all participants, with the recommendation of disseminating

and discussing it with their colleges. We suppose that the participants have commented on

the event in their professional environment.

On the other hand, up to now we do not see more discussion about xenotransplants from the

Neo Socratic dialogue, especially since its reach is limited to the individuals which

participated in the two dialogues.

5.8. In which way were the results of the Neo Socratic Dialogue broughtin the xenotransplantation debate?

Up to now, we do not believe that the Neo Socratic dialogue has led to more debate about

xenotransplantation in Spain, given the difficulties of dissemination of the event.

The answer of this question remains for the further dissemination phase.


6. Impact

6.1. Which consequences do participants think that the Neo SocraticDialogue will have for their professional and private everyday life?

The participants were asked about the potential usefulness of the NSD for their personal or

professional life. The results are recorded in Table 21.

Taking together both dialogues, 95% of the participants considered the method as “Very

useful” or “Rather useful”, while only 5% rated it as “Rather not useful”. With respect to this

point, the differences between the two dialogues are noteworthy, with a more positive

evaluation resulting from the second NSD. The mean in this case was 1,82, a value situated

in the interval between “Very useful” and “Rather useful”. In the first dialogue, the mean was

2,13, corresponding to an interval between “Rather useful” and “Rather not useful”. The

overall assessment regarding the issue of “usefulness” is very positive.

Table 21: Assessment of the usefulness of the NSD for the own work

Ver

y us

eful

Rat

her

usef

ul

Rat

her

not

usef

ul

Not

use

ful

Mis

sing

dat

a

Mea

n

Std

. Dev

iatio

n

If you think about the instrument of the NSD -To what extent do you think is this process tothink about ethical problems useful for yourprofessional or voluntary work?

2(0/2)

16(7/9)

1(1/0)

0(0/0)

1,95(2,13/1,82)

0,40(0,35/0,40)

(Source CSIC-Survey 2003)

6.2. Did the dialogue change their awareness of ethical problems ofxenotransplantation?

Only one participant from the first dialogue said, in the ex-post questionnaire, that the Neo

Socratic dialogue had changed his point of view about xenotransplantation.

This participant expressed, in the questionnaire, that the Neo Socratic dialogue had helped

him to discover other opinions and different points of view about the issue of

xenotransplantation. Listening to the judgements and thoughts of others allowed him to be

more tolerant.

• NSD1, expost questionnaire: “Contemplar diferentes puntos de vista y aspectos que hasta ahora no

conocía me han hecho modificar un poco mi actitud, haciéndola más positiva”

Summary: “By looking to other points of view uncovered to me up to now, I have slightly changed

my attitude towards being more positive”.


In the second dialogue, 45% of the participants declared that their knowledge and points of

view about xenotransplantation had changed due to the Neo Socratic dialogue, according to

the ex-post questionnaire.

Those persons who admitted that the dialogue had changed their opinions, expressed two

main ideas: the dialogue have increased their knowledge about transplantation in general

and they modified some opinions after listening to the judgements and opinions of the other

participants.

• NSD2, expost questionnaire: “No es que modificara mi actitud y juicio frente a los xenotrasplantes, pero sí

ha influido en la forma de plantearme el tema y establecer un juicio hacia él”,

Summary: “NSD has helped to look to xenotransplantation , to make a judgement”.

• NSD2, expost questionnaire: “Ha ampliado mis conocimientos porque mi base era escasa, por lo que

asistí sobre todo a escuchar y a aplicarlo sobre mis propias valores creencias”

Summary: “NSD has enlarged my knowledge base and to look to it in relation to my own beliefs”.

• NSD2, expost questionaire: “Me ha proporcionado más información y una forma más rica y de ver el

tema, considerando más elementos y más puntos de vista”

Summary: “I have got more and richer information with more faces and pints of view”.

• NSD2, expost questionnaire: “Veo que los técnicos puede que no sean los que en última instancia

asuman los riesgos”

Summary: “I realized that the technical experts could be not the ones taking risky decisions”.

• NSD2, expost questionnaire: “Empiezo a considerar los xenotrasplantes como un problema global, de

implicaciones comunitarias y no sólo individuales”

Summary: “I am starting to look at xenotransplants as a global problem”.

The participants of the second dialogue thus emerged as more receptive to the ideas of the

others than the participants of the first dialogue.

6.3. Did the dialogue change their communicative patterns andcapabilities in related ethical questions?

On the whole, the participants of both dialogues expressed, in the ex-post questionnaires, a

positive point of view about the Neo Socratic dialogue. This kind of dialogue has some

advantages which are not evident in other types of debates or discussions.

The dialogue allows participants to express different ideas, opinions or thoughts, without the

common tendency of exchanging fixed positions among the audience. Even if discussion

takes place, the moderator tries to integrate all the different opinions in a final judgement or

statement.


There is no intention of integrating all the opinions or points of view in other classical types of

debate or discussion. All the participants express their thoughts but nobody takes care of

finding a common point or a final general judgement. An example of this type can be found in

the political debates on television.

The strict order in which people speak facilitates the participation of the whole audience.

Each person can express his or her opinion clearly, without interruptions from the rest of the

speakers. In the conventional debates, sometimes it is impossible to hear the opinions of all

participants, because there are persons who try to force their voices to be heard or to

convince the audience.

The telephone interviews allowed to collect deeper reactions than the written questionnaires.

The question about “Whether the NSD has influenced participants’ attitudes in relation to

controversial situations that have been faced along the professional or personal lfe, gave rise

to the following responses:

• NSD1, participant 1: “Yo creo que la conclusión que aprendes es que dialogando pues todo el mundo

puede entenderse, y (ININTELIGIBLE) y que exista una actitud abierta en todo el mundo, pues de

intentar buscar siempre un consenso en ese sentido y seguramente luego conseguidos estos consensos,

siempre acaban siendo consensos de mínimos, pero también es muy difícil... yo creo que cuando no

tienes evidencias claras y concretas de lo que estás haciendo es difícil llegar a mucho más”

Summary: “I believe the possibility remains in reaching minimum consensus… which is not bad

when there are not clear evidences”.

• NSD1, participant 6: “Yo creo que sí. Porque lo que aprendes es a escuchar otros puntos de vista, otras

formas de ver las cosas diferentes a las que tú tienes, y que muchas veces surgen puntos de vista que a

ti ni se te habían imaginado, entonces yo creo que en ese aspecto sí que me ha servicio de utilidad, que

es muy importante escuchar a otras personas la opinión que tienen para... porque tú igual tienes una

visión sesgada de la realidad, la tienes de hecho, y entonces al escuchar a otras personas se te abren

nuevos horizontes”,

Summary: “I have found it useful for opening new visions”.

• NSD2, participant 3: “No me lo he planteado, yo creo que a nivel de resolución, o para plantear formas de

resolución de cuestiones nuevas, por ejemplo, en el área de las tecnologías, etc., pues parece que puede

ser un método interesante, un método de abordaje interesante. Claro, como no va directamente a

analizar el problema, sino que se busca a través de... por llamarlo así, de un planteamiento de una

cuestión paralela o problemas que se hayan podido plantear en la vida que esté relacionados, que me

parece que es interesante. Yo creo que sí”

Summary: “I found interesting the NSD as an interesting approach”.

• NSD2, participant 5: “No, no lo diría, pero no porque en sí mismo no me pareciera atractiva la fórmula,

sino porque de alguna manera primero la experiencia fue limitada, y en segundo lugar, es difícil plantear

esto en un ámbito cotidiano salvo que estés en... cómo te diría yo, en el contexto adecuado y con la

gente preparada, y con una cierta información sobre el tema o sobre la forma de discutir, sí puedo decirte


que evidentemente a la hora de manejar una determinada discusión pues sí hay algunos elementos que

se pueden introducir... que pude tomar del modelo neosocrático, pero no todo el modelo”

Summary: “I do not think it is so easy. The model is attractive but…”.

• NSD2, participant 7: “No, vamos a ver, fue una toma de contacto con una forma nueva de buscar

soluciones a problemas, a conflictos, pero tampoco luego... yo es que estoy en un Comité asistencial de

ética de un hospital, entonces también utilizamos los métodos de resolución de conflictos que supongo

que conocerás, entonces lo que sí me pareció fue una expectativa muy buena de conocer un nuevo

método, que no lo había practicado y que no lo había puesto en práctica nunca, pero, vamos, ¿si me

varió la forma de resolver conflictos?, bueno, dependiendo del conflicto vas utilizando un método u otro

¿no? de toma de soluciones”,

Summary: “For me that I am used as member of a Committee on Ethics, the NSD was a way to

know a new method. Different conflicts may require different methods”.

• NSD2, participant 8: “No, ya te digo, que es que no se ha presentado ninguna situación así conflictiva,

generalmente reacciono, y hasta el momento no se me ha presentado ninguna situación. En el momento

que se me presente y tenga que reflexionar sobre algo, ya que sí probablemente razone más, en eso sí

que me ha valido, pero vamos, hasta el momento no lo he utilizado”

Summary: “Up to now I have not been confronted to a situation of this type. I think the NSD Hill

serve me in the future as my professional career evolves”.

As can be seen from these comments, which follow the general pattern of the participants,

the NSD has not arrived to change in substantive manner how to confront labour or personal

conflicts. The main influence seems to lie in having evolved more open attitudes towards

others’ opinions and by being more prone to dialogue. This is, poor as it may appear, a very

important outcome for the Spanish ways of approaching.

In any case, the participants declared that they have not had the opportunity to apply the

method since the dialogue took place, as many of them state that its applications into normal

life situations does not seem easy.


7. Resonance

7.1. Did the Neo Socratic Dialogue have a resonance in the policymaking process, scientific community, media, public debate orindustry?

So far, we have no news about the resonance of the Neo Socratic dialogue in any of these

spheres.

Only two pieces of news have been published in relation with xenotransplantation since

finishing the baseline evaluation.

It can be said that the debate on xenotransplantation is not actively engaged in Spain, like it

seems to be in the sphere of European Union.


8. Summary and conclusion

This part of the document addresses the evaluation of the NSD that took place in Spain

within the frame of the XENO project. It intends to know the level of fulfilment of the

objectives, six in total, as agreed in the course of the project (Karlsruhe meeting, 2003). The

questionnaires ex-ante and ex-post, the tape record transcriptions of the NSD and the

telephone interviews has served as support for its elaboration.

8.1. Goal 1: To raise awareness of relevant actors and the public forethical questions of XTP

8.1.1. Raise awareness of relevant actors and the public for ethical questions of XTP

Some specific details and indications about this objective are given in the section 3.1 and 5

of the present document.

As it has been repeatedly indicated since the Baseline Evaluation of the project, there are no

many prominent actors on the issue of xenotransplantation in Spain. There are few

researchers, although one of them performs his work at a very advanced level in the

transplant of pigs to baboons. Two of them have been attending the NSD1. Also present

were bioethicists, journalists, doctors, representatives of patients and patients, together with

some more lay people in relation to the issue at stake, though all of them holding a university

degree. We would not count on political representatives, except for the sporadic presence of

one of them, neither on the defenders of the rights of animals. These last have been invited

but we did not have a positive answer from them.

Almost half of the participants stated their strong or medium relation to the topic of

xenotransplantation. Similar percentage was obtained from the participants when they were

asked on their level of information on the topic –slightly more than half of the participants

identified themselves with the option “Fully informed” or “Fairly informed”.

With respect to the characteristics of the group (see Table 12), the appraisal was highly

positive, with the exception of the variable “Well composed”.

8.1.2. General assessment of the NSD

On the global assessment of the event, the participants stated a mean of 1,89, very close to

the option “Fair”, though important differences among the two NSD were observed, as the

mean value for the first NSD was 2,25 and 1,64 for the second one. It seems therefore that

the participants in the second NSD have expressed a more favourable opinion that those

from NSD1 with respect to the issue of inviting their colleagues to participate in future Neo


Socratic Daialogues, an indication of the higher level of satisfaction reached by the second

group.

The majority of the participants showed positive positions about the potential development of

this medical technology. A low percentage, less than 25%, manifested some reservations on

the convenience of that technology. In any case, it can be clearly stated that the NSD did not

contribute to change the initial position with respect to xenotransplantation. At its maximum,

the dialogue has contributed to gather new information on technical questions up to now

unknown by some participants.

With reference to the eventual usefulness of the conclusions on xenotransplantation for the

professional having some links to this biomedical technology, the majority of them stated in

the telephone interviews that they believe the NSD outcomes may influence their work. The

outcomes have brought to them new view points arising from a heterogenous gathering of

individuals, what represents an important gain to the traditional point from which the experts

perform their research activity. Further information about this issue can be found in the

section related to changes in the awareness of ethical problems of xenotransplantation.

8.1.3. Specific outcome from the NSD

Items like “Gave me new insights into the ethics of XTP”, “Gave a clear answer, how to deal

with the problem of XTP”, “Clarification of my own standpoint”, “Provided new information

about XTP”, “Created consensus about XTP” and “A change in my position towards the

ethics of XTP” have received scores which place them as “Low Valued Experiences” (Table

16).

Specific responses found in the ex-post questionnaires such as “NSD has helped to look to

xenotransplantation, to make a judgement”, “NSD has enlarged my knowledge base and to

look to it in relation to my own beliefs”, “I have got more and richer information with more

faces and points of view”, “I realized that the technical experts could be not the ones taking

risky decisions”, “I am starting to look at xenotransplants as a global problem” serve as

examples on how they have reacted to the translation of the dialogue experience to the

specific topic. According to these statements made by the participants, the Neosocratic

dialogue has helped to enlarge their vision of xenotransplantation but not to substantially

modify the previuos opinions on it.


8.2. Goal 2: Discuss ethical problems of XTP

8.2.1. Transfer of NSD results to the ethics of XTP

According to the proposed methodology in the NSD, the last phase would permit a transfer

of the dialogue outcomes to the ethical aspects on xenotransplantation. In the Spanish case,

this phase proceeded with difficulties, particularly in the case of the first dialogue.

As stated along this document, the participants in the first dialogue did not reach adequate

fluency in their interventions. The facilitator had to encourage them to express their views at

several steps during the event. The final phase aiming to transfer the outcomes to the issue

of xenotransplantation was not an exception. Besides this lack of fluent dialogue, too much

time was devoted to the selection of the example and its explanation. By this reason, barely

one hour could be allocated to the transfer phase. It was possible to express judgements on

the way how it can be possible to face broad risks in relation to biotechnology for there were

no possibilities to reach any specific agreement on the xenotransplantation field, took the

initiative to minimize the risks issue in relation to the promotion of research in this topic.

The second NSD was somewhat more positive at this respect. Dialogue was more easy,

participants were keen to talk and express their views without the need for the facilitator to

encourage them. All this favoured and alternative exchange of views without appearing too

many uncomfortable silences. The phase of transfer had some more time for its

development what led to a greater exchange of ideas. The participants expressed their

opinions about the optimal conditions for beginning xenotransplantation trials and their

subsequent medical practice and on who should participate in the committees that would be

acting in agreement with those conditions. Many participants express their wishes that the

experts committees should be composed by individuals both with relationship with research

and with no links to that activity in order to gain independence for the normative process.

Further details and information on the results of the process of transfer can be found under

item called “Transfer from the dialogue to the XTP issue”.

8.2.2. Which problems did arise in the NSD?

1. There are no many actors involved in the xenotransplantation issue in Spain.

Moreover, this topic has not raised a great debate and interest among our citizenship

as it has been already stated in the Baseline Evaluation phase. It has not been easy

to attract the well trained and knowledgeable people on xenotransplantation for

several reasons. One of the main problems was the disponibility of time, as many

invited persons had to cancel their participation in the last minutes by agenda

problems. On the other hand, the active participants expressed views that more time


would have been necessary for extending the dialogue in order to reach more fruitful

results. There is a paradoxical situation with respect to time availability criteria.

2. Spain and the Spanish society are not used to the dialogue as socio-political

instrument. There is no a deep-rooted experience of participation in dialogue and

consensus instruments. One of the reasons stems in the Spanish educational

system that does not favour, at least in earlier periods, the active attitude to express

opinions in the normal life process of schools, colleges and universities. This

prevents the people that have been educated according to other schemes to get

acquainted with socio-political methodologies base on participation. For this reason,

the evolution of both NSD has suffered from lack of fluency in the participants

behaviour, though the facilitator made strong efforts to “get out” their personal

opinions.

3. Each NSD was allocated six hours time for development, though only the last one

was devoted to the transfer phase. According to the opinions collected from the ex-

post questionnaires and the telephone interviews, the participants requested more

time for this last phase in order to enable the drawing of conclusions related to the

specific case of xenotransplantation. Many have also suggested the organizer to

propose the examples in order to short time in the initial phase. This argument

probably runs against the same nature of the NSD. Those raising this argument

thought that it should favour the election of an adequate example in order to make

easy the correct development of the NSD.

4. About half of the participants in the Spanish NSD did not have a professional or

personal direct link with the issue of xenotransplantation. Nevertheless, all the

participants hold a high cultural and educational level, as all of them possess a

university degree. One can think about the convenience of the intervention in all

these participative methods of individuals with distinct educational and socio-

economic levels. This appears it be the only way to guarantee an adequate sample

of our societies. But this argument, that has been present since the onset of this

project (first meeting in Vienna), immediately raises the question about the feasibility

to carry out a NSD with such a blend of participants. Further information and details

are expounded in the section of actors enrolled in the NSD.

5. As it can occur with other methods based on the discourse and participation, the

legitimation of such type of exercise and the relation to the political process of taking

decisions is, at least, unclear and there no seems to follow directly. In our specific

project context, the dissemination and diffusion of results was left to the participants

themselves. It is tempting to think that in the future, would be interesting to settle,

even prior to the same NSD, instruments of diffusion involving relevant actors and

even institutions.


8.2.3. Specific assessment of outcomes

We have attempted to correlate expectations with experiences. Expectations on the NSD

have been classified in Table 6 according to four different categories: “Topic of XTP”,

“Method of the NSD”, “Qualities of the dialogue” and “Personal rewards from the dialogue”.

The experiences as an indication of the evaluation of the outcomes do match with the

foreseen expectations and can be classified according to those typologies.

As it is shown in Table 14, the higher valued experiences with scores lower to 1,50 were:

“Conveyed the instrument NSD”, “Allowed a dialogue equal to all participants”, “Contributed

to learning to know other people and their standpoint”, “Allowed me to get to know a different

form of discussion” and “Provided an open atmosphere”. Four of these five experiences

belong to the categories “Method of the NSD” and “Qualities of the dialogue”. It seems clear

that the participants from both groups, taken together, valued more positively the approach

and experience of the new method as well as its advantages as a way of dialogue than the

other aspects of the debate: i. e. the relationship to the issue of xenotransplantation or the

self-rewarding result of the dialogue.

More information on the assessment of the experiences is forwarded in the section “How do

participants explain their assessment?”

8.2.4. General assessment of the NSD

All of the participants in the dialogue assure that it fulfilled most or all of their expectations,

according to the respective question from the questionnaire ex-post.

The results on the question about the general expectations of the NSD are collected in Table

13. From the total, more than 63% of participants selected the options “Surpassed” or “Met”

to give an average of 2,16. It should be underlined that none of the participants opted for

“Rather did not” or “Did not met”, a strong indication that none of the participants of the two

NSD felt disappointed by the outcomes of the experiment.

As stated, the members of the second group gave a more positive assessment to the

exercise with a value of 1,82 mean, as compared to a mean of 2,63 for the first dialogue.

The first average (second dialogue) reaches a value close to the option “Met” while the

second approaches the option “Rather met”.

The telephone interviews concerning the participants in the first NSD also provide a positive

general assessment with regard to the possible expectations. A significant majority declared

that the experience satisfied the expectations or, at least, part of them. Only two interviewees

expressed different opinions: one of them considers the experience as unfavourable; the


other states that he/she did not have expectations on “a priori basis” as considered the NSD

as an “experiment”.

All of the interviewees without any exception have praised the dialogue by its novelty and by

its marked difference with the usual way to carry out debates.

The attitudes towards the NSD were experimental what implies statements about lack of

techniques and patterns of behaviour to be followed in the new mode of debate. This

statement is supported by the fact that half of the respondents expressed uncertainty about

their participating roles due to the lack of knowledge on this social technique.

In the case of the NSD2, the assessment is highly positive because a great majority of the

interviewees declared their expectations to have been surpassed or covered. The remaining

expressed less positive assessment indicating that some or all their expectations have not

been attained. This extreme position has to be shaded by the fact that they dif not have a

preconceived opinion or expectations, but in any case all three considered the exercise as

fruitful in broad terms.

8.3. Goal 3: Clarify the responsabilities of various actors for ethicalquestions of XTP

The first step to move the actors involved in the development of xenotransplantation to

express and clarify opinion about some ethical aspects implies their willingness to participate

in the NSD. As it has been stated in previous sections of this report, there are no many

actors in Spain. Participants in the Spanish NSD were scientific and social researchers,

medical transplantation practioners, representatives of patients associations, one journalist,

bioethicists. This sample in considered by the authors of this report as quite satisfactory in

view of the limited social impact of the xenotransplantation issue in Spain.

During the course of the two dialogues, those participants holding a tighter professional or

personal link to xenotransplants were the most positive and active. They intervened

frequently and fluently in the dialogue. The great majority of them have expressed, both in

the questionnaires and in the interviews, very strong argument on the outcomes of the NSD

to know foreign opinions on the topic and to become aware of ethical and social aspects

unknown to them before the exercise.

The ex-post questionnaire asked the participants about the opinion on a possible usefulness

of the NSD for the future work. The results are commented in length in section 5.1 The mean

of both surveys matches close to the option “Rather useful”, with, as usual, a more positive

evaluation by the participants in the second NSD, mean 1,82, as compared to that of the first


NSD, mean 2,13. These differences, as has been stated repeatedly, are almost surely due to

the composition of both groups.

The telephone interviews did not differ in the appraisal. It can be considered as a shaded

positive. The participants in the first NSD were quite supportive of this methodology in

relation to its possible use or application to the professional activities of the participants.

However some nuances were indicated to improve the efficacy:

• To increase the dynamics and promote the active participation of the attendants.

• To select a good moderator-facilitator of the dialogue.

• To give more structure and order to the discourse and to limit its boundaries.

• To better define the framework of the discussion in order to achieve concrete and

practical conclusion.

The assessment from the second NSD is also very positive in relation to the utility of the

experience in the work projection.

The main critical comments refer again to the lack of familiarity on the mechanism of this

type of debate as well as to some more practical questions: need for a better formation of the

participants, a simpler structure, shorter, more concise and with the selection of more precise

examples previously selected.

An indicator to value this goal refers to the question about the possibility to reach a

consensus on the issue of xenotransplantation. This experience has been collected in the

Table 14 of item 5.6.1. The mean is 2,42, one of the lowest appraisals. In Table 16, this

experience has been placed within the group “Low expectations”-“Low valued experiences”.

8.4. Goal 4: To provide information to decision makers about the ethicalbasis and consequences of XTP

In general the accomplishment of this goal will be part of the dissemination strategy. The

NSD had some decision makers in the group. Their participation was a contribution to this

goal, they will be kept informed about the further progress of the project.

8.4.1. Dissemination strategy

The members of the Spanish team have been worked in some activities which contribute to

the dissemination of the results of the XENO project. These activities are essentially

addressed to a knowledgeable public as scientists, clinicians, bioethicists, social scientists,

scholars on biotechnology courses, etc.


8.4.1.1. Conferences or seminars

• David Santos, “Xenotransplantation: analysis of press contents”, Seminar: “Los desafíos

de la biotecnología en el mundo actual”, Cátedra Miguel Sánchez Mazas, 12 de

diciembre de 2002, Universidad del País Vasco, Vitoria-Gasteiz.

• David Santos and Marta Plaza, “Biotecnología, sociedad y opinión pública”, Máster en

Ciencia, Tecnología y Sociedad, 16 de septiembre de 2003, Universidad de Salamanca,

Salamanca.

• David Santos and Marta Plaza, “Percepción social de la transgénesis, xenotrasplante y

clonación animal”, Seminar: “Transgénesis, clonación animal y xenotrasplante: aspectos

científicos, éticos y jurídicos”, Cátedra Interuniversitaria Fundación BBVA - Diputación

Foral de Bizkaia de Derecho y Genoma Humano Universidad de Deusto, 24 y 25 de

noviembre de 2003, Universidad del País Vasco/EHU, Bilbao.

8.4.1.2. Papers Published

• “Xenotrasplante y debate ético: un proyecto europeo”, David Santos y Emilio Muñoz,

Alcer, número 122, julio, agosto, septiembre, 2002, Madrid.

• “Xenotransplantation, ethical issues of a challenging biomedical development”, Emilio

Muñoz y David Santos, Business Briefing Global Healthcare 2003, mayo 2003, Londres.

• “Opinión pública y debate ético-social sobre un reto de la biotecnología: los

xenotrasplantes”. David Santos y Paolo Dordoni, Sistema: Opinión pública y

biotecnología, Editorial Sistema (forthcoming).

8.5. Consensual policy options for ethical problems of XTP

As has been discussed in the section 8.2, it has been rather difficult to draw conclusions or

patterns for action in relation to the specific issue of xenotransplantation. In both NSD, the

transfer phase was too short and it was only possible to reach consensus on principles to be

applied to risk situations, but without allowing to make them concrete and applicable to the

case of transplantation of animal organs.

The criteria adopted by the participants are specified in section 5 of this report. In that

section, there is a detailed exposition of those judgements that raised great interest and had

been supported by a great majority of the participants. It has become evident from all

analysis that in order to enable evident the proposal of policy options in relation to


xenotransplantation, it would have been necessary to allocate more time to the last phase of

the NSD. This argument has been clearly stressed all along the telephone interviews.

8.6. To improve the communicative patterns and capabilities of actorsin the field to cope with ethical questions arising from modern scienceand technology

We have estimated as adequate indicators to value this goal those related to expectations

and experiences which had been gathered under the categories “Qualities of the dialogue”

and “Personal rewards from the dialogue”, as shown in Table 16. On the other hand, Table

16 shows the assessments of the participants on each one of those experiences.

“A dialogue equal to all participants”, “An open atmosphere” and “To learn to know other

people and their standpoint” were the best valued experiences, reaching scores close to 1

which is the maximum one. The less valued experiences were “To convince others with my

point of view”, “To clarify my own standpoint” and “That other participants refer to my

arguments”.

In the telephone interviews, the participants were asked about the possibility that the NSD

method enabled the participants to modify their attitudes when facing conflicts in their

professional and personal life as well as the way to solve them.

The great majority of the responses to this issue from the NSD first group do not recognize

that the Neo Socratic method has contributed to any essential modification in the way they

are facing the normal life problem. Seven persons answered in this direction. Only one

person stated clearly that this form of debate participation helped him/her to understand

other points of view and to open more ways to dialogue.

It should be noted however that five out of the seven participants not recognizing a positive

impact on the way of acting, considered the experience a positive one and very interesting

as well as a new path to reach consensus among confronted positions.

The responses from five members of the second NSD were largely more positive at this

respect while recognizing that the method has driven them to change attitudes and ways of

doing in relation to personal conflicts, while the remaining six did not find the NSD useful for

solving personal conflicts, though they admitted the experience as attractive and new.

Authors: David Santos, Emilio Muñoz, Gloria Ponce and Paolo Dordoni

Title: National Evaluation Report Neo Socratic Dialogue: Spain

Projektbericht/Research Report

© 2004 CSIC

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