Disability, Disability, Biotechnology,Biotechnology,

and the Right to Existand the Right to Exist

Disabilities Health Research Network Disabilities Health Research Network KelownaKelowna

January 29, 2010January 29, 2010TIM STAINTONTIM STAINTON

University Of British ColumbiaUniversity Of British Columbia

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““OLD EUGENICS”OLD EUGENICS”

Sir Francis Galton (1822-1911) assisted by Karl Sir Francis Galton (1822-1911) assisted by Karl Pearson began in the mid 1860's to put forward Pearson began in the mid 1860's to put forward the view that all characteristics were hereditable, the view that all characteristics were hereditable, including physical and mental capacity. including physical and mental capacity.

Eugenics (Greek=Eugenics (Greek=wellborn)wellborn) : "the study of : "the study of agencies under social control that may improve agencies under social control that may improve or impair the racial qualities of future generations or impair the racial qualities of future generations either physically or mentally“either physically or mentally“

The Eugenics MovementThe Eugenics Movement

In 1895, Lord Herschell, speaking at the In 1895, Lord Herschell, speaking at the founding of the founding of the National Association for National Association for Promoting the Welfare of the Feeble-Promoting the Welfare of the Feeble-MindedMinded moved a resolution affirming that: moved a resolution affirming that:

The existence of large classes of feeble-The existence of large classes of feeble-minded persons is a danger to the moral minded persons is a danger to the moral and physical welfare of society and calls and physical welfare of society and calls for immediate attention both on the part for immediate attention both on the part

of public authorities and charitable of public authorities and charitable enterprise.enterprise. ( (The TimesThe Times, 1898), 1898)

H.H.Goddard (1866-1957)H.H.Goddard (1866-1957)

Director of the first psychological research Director of the first psychological research laboratory for the study of mental deficiency laboratory for the study of mental deficiency at the Vineland Training School in the U.S.. at the Vineland Training School in the U.S..

For many generations we have recognized For many generations we have recognized and pitied the idiot. Of late we have and pitied the idiot. Of late we have recognized a higher type of defective, the recognized a higher type of defective, the moron, and have discovered he is a moron, and have discovered he is a burden...a menace to society and civilization, burden...a menace to society and civilization, that he is responsible in large measure, for that he is responsible in large measure, for many, if not all, our social problems...many, if not all, our social problems...

FOUR EUGENIC STRATEGIESFOUR EUGENIC STRATEGIES

Marriage RegulationMarriage Regulation

SterilizationSterilization

IncarcerationIncarceration

EliminationElimination

By 1933 both Alberta and British Columbia had By 1933 both Alberta and British Columbia had eugenic sterilization laws. eugenic sterilization laws.

Winston Churchill, Home Secretary from Winston Churchill, Home Secretary from February 1910 to October 1911. He warned February 1910 to October 1911. He warned Asquith of "a very terrible danger to the race" Asquith of "a very terrible danger to the race" and that until the public came to accept and that until the public came to accept sterilization, that segregation from the sterilization, that segregation from the community and between the sexes was community and between the sexes was required. required.

Eugenics ApogeeEugenics Apogee[The State] must see to it that only the healthy beget [The State] must see to it that only the healthy beget children;...It must declare unfit for propagation all who children;...It must declare unfit for propagation all who are visibly sick or who have inherited a disease and are visibly sick or who have inherited a disease and can therefore pass it on,...Those who are physically can therefore pass it on,...Those who are physically and mentally unhealthy and unworthy must not and mentally unhealthy and unworthy must not perpetuate their suffering in the body of their perpetuate their suffering in the body of their children....A prevention of the faculty and opportunity children....A prevention of the faculty and opportunity to procreate on the part of the physically degenerate to procreate on the part of the physically degenerate and mentally sick, ...would not only free humanity and mentally sick, ...would not only free humanity from immeasurable misfortune, but would lead to a from immeasurable misfortune, but would lead to a recovery which today seems scarcely considerable.recovery which today seems scarcely considerable.

NEW EUGENICSNEW EUGENICS

Critics of the use of these new Critics of the use of these new technologies argue that essentially our technologies argue that essentially our eugenic choices are moved back to a ‘pre-eugenic choices are moved back to a ‘pre-birth’ period, but are still eugenic decisionsbirth’ period, but are still eugenic decisions

Proponents argue the new technology Proponents argue the new technology does not represent a new eugenics as does not represent a new eugenics as there is no state coercion but simply there is no state coercion but simply expanded information for individual choiceexpanded information for individual choice

WHAT EXACTLY ARE WE WHAT EXACTLY ARE WE TALKING ABOUT?TALKING ABOUT?

PRE-NATAL TESTINGPRE-NATAL TESTING

– TESTING FOR A RANGE OF ‘DEFECTS’TESTING FOR A RANGE OF ‘DEFECTS’DOWN’S SYNDROME, TAY SACHS, SPINA DOWN’S SYNDROME, TAY SACHS, SPINA BIFIDA, CYSTIC FYBROSIS (APX. 170-80 BIFIDA, CYSTIC FYBROSIS (APX. 170-80 ‘DEFECTS’ CAN BE TESTED FOR)‘DEFECTS’ CAN BE TESTED FOR)

TYPES OF TESTTYPES OF TEST

– NON-INVASIVE-LOW RISK-PREDICTIVENON-INVASIVE-LOW RISK-PREDICTIVE

ULTRASOUNDULTRASOUND

– Soft MarkersSoft Markers

– Nuchal Translucency ScreeningNuchal Translucency Screening

Must be done between 11 and 14 weeksMust be done between 11 and 14 weeks

NT scan alone will detect about 70 to 80 percent of NT scan alone will detect about 70 to 80 percent of babies with Down syndrome. babies with Down syndrome. 5 percent false-positive rate 5 percent false-positive rate

MATERNAL SERUM SCREENING (MSS)MATERNAL SERUM SCREENING (MSS)

MATERNAL AGEMATERNAL AGE

New protocols increasingly use a combination of New protocols increasingly use a combination of all three all three

The detection rate for the first-trimester combined The detection rate for the first-trimester combined screening ranges from 79 to 90 percent.screening ranges from 79 to 90 percent.

New non-invasive tests coming to market with very New non-invasive tests coming to market with very high accuracy rateshigh accuracy rates

GENETICGENETIC

– INVASIVE-HIGH RISK OF SPONTANEOUS INVASIVE-HIGH RISK OF SPONTANEOUS ABORTION (1:200-400)ABORTION (1:200-400)

– HIGHLY ACCURATEHIGHLY ACCURATE

CHORIONIC VILLUS SAMPLINGCHORIONIC VILLUS SAMPLING (CVS)(CVS)

AMNIOCENTESISAMNIOCENTESIS

WHO IS TESTEDWHO IS TESTED

Normally women over 35Normally women over 35

““High Risk”High Risk”

Movement toward earlier/universal Movement toward earlier/universal testing (Manitoba & Ontario, COGC)testing (Manitoba & Ontario, COGC)

Funded through Provincial Health Funded through Provincial Health ServicesServices

REASONS FOR TESTINGREASONS FOR TESTING

TO ASSIST PARENTS IN PLANNINGTO ASSIST PARENTS IN PLANNING

TO DECIDE WHETHER TO TERMINATE TO DECIDE WHETHER TO TERMINATE A PREGNANCYA PREGNANCY

NO THERAPEUTIC INTERVENTIONS NO THERAPEUTIC INTERVENTIONS ARE PRESENTLY AVAILABLEARE PRESENTLY AVAILABLE

PRE-IMPLANTATION GENETIC PRE-IMPLANTATION GENETIC DIAGNOSIS (PGD)DIAGNOSIS (PGD)

USED IN CONJUNCTION WITH IVF TO USED IN CONJUNCTION WITH IVF TO SELECT WHICH EMBRYOSSELECT WHICH EMBRYOS

ALLOWS FOR SELECTION OF A ALLOWS FOR SELECTION OF A BROAD RANGE OF CHARACTERISTICSBROAD RANGE OF CHARACTERISTICS

CURRENTLY NOT WIDESPREAD IN CURRENTLY NOT WIDESPREAD IN CANADACANADA

REGULATIONREGULATION

Assisted Human Reproduction ActAssisted Human Reproduction Act– Regulates prohibited and controlled activities Regulates prohibited and controlled activities

regarding selection and embryonic regarding selection and embryonic manipulationmanipulation

Prohibited activities include cloning and sex Prohibited activities include cloning and sex selection up to 8 weeksselection up to 8 weeksException for prevention, diagnosis and Exception for prevention, diagnosis and treatment of sex related disorderstreatment of sex related disorders

US research showed a 15% decrease in US research showed a 15% decrease in births of babies with Down syndrome births of babies with Down syndrome between 1989 and 2005. In the absence of between 1989 and 2005. In the absence of prenatal testing, researchers would prenatal testing, researchers would anticipated a 34% increase in births - due to anticipated a 34% increase in births - due to the trend of women waiting longer to have the trend of women waiting longer to have children (Skotko, 2009). children (Skotko, 2009).

US estimates are about 90 percent of US estimates are about 90 percent of women who learn they are carrying a child women who learn they are carrying a child with down syndrome choose to end their with down syndrome choose to end their pregnancies.pregnancies.

Easier testing will increase the Easier testing will increase the number of terminationsnumber of terminations

Very real prospect of Very real prospect of eliminating Downs syndrome eliminating Downs syndrome and other testable condition and other testable condition such as spina bifidasuch as spina bifida

WHAT ARE THE ARGUMENTS WHAT ARE THE ARGUMENTS THAT ARE USED TO SUPPORT THAT ARE USED TO SUPPORT THE ELIMINATION OF PEOPLE THE ELIMINATION OF PEOPLE

WITH DISABILITIES? WITH DISABILITIES?

MORAL STATUS AND MORAL STATUS AND PERSONHOODPERSONHOOD

The dominant premise in western thought from The dominant premise in western thought from Classical times to the present is that to be Classical times to the present is that to be accorded moral status (or political status) one accorded moral status (or political status) one must be a ‘rational’ being. (Persons-Human must be a ‘rational’ being. (Persons-Human distinction)distinction)

human beings who look and are physically human beings who look and are physically constructed like men...are only marginally or constructed like men...are only marginally or by a sort of prudent and humane courtesy fully by a sort of prudent and humane courtesy fully human beingshuman beings (Quinton) (Quinton)

DOES RATIONALITY DOES RATIONALITY DETERMINE MORAL STATUS?DETERMINE MORAL STATUS?

Rationality or intelligence is not a fixed or Rationality or intelligence is not a fixed or static conceptstatic concept

If level is important then why are those If level is important then why are those with greater ‘intelligence’ not accorded with greater ‘intelligence’ not accorded greater moral status?greater moral status?

Is it the key variable?Is it the key variable?

‘‘SUFFERING AND MORALITY’SUFFERING AND MORALITY’

‘‘where we we know that a particular where we we know that a particular individual will be born ‘deformed’ or ‘ individual will be born ‘deformed’ or ‘ disfigured’. …the powerful motive that we disfigured’. …the powerful motive that we have to avoid bringing gratuitous suffering have to avoid bringing gratuitous suffering into the world will surely show us that to do into the world will surely show us that to do so would be wrong.’so would be wrong.’

John HarrisJohn Harris, Clones Genes and Immortality (Oxford, , Clones Genes and Immortality (Oxford, 1992)1992)

SUFFERING AS MORAL SUFFERING AS MORAL JUSTIFICATIONJUSTIFICATION

DO PEOPLE WITH DISABILITIES DO PEOPLE WITH DISABILITIES NECESSARILLY ‘SUFFER’ MORE THAN NECESSARILLY ‘SUFFER’ MORE THAN OTHERS?OTHERS?

IS SUFFERING ‘BAD’ OR PART OF IS SUFFERING ‘BAD’ OR PART OF BEING HUMAN?BEING HUMAN?

PRO-CREATIVE BENEFICENCEPRO-CREATIVE BENEFICENCE

“Couples (or single reproducers) should select the child, of the possible children they could have, who is expected to have the best life, or at least as good a life as the others, based on the relevant, available information”

J. Savulescu. Procreative Beneficience: Why We Should Select The Best Children. Bioethics 2001;15(5): 413-426.

Argued in relation to PGDArgued in relation to PGD

Presented as ‘moral duty”Presented as ‘moral duty”

How does one determines what How does one determines what constitutes the ‘best life’?constitutes the ‘best life’?

Does this condone sex or light skin Does this condone sex or light skin selection?selection?

Reproduction of oppressive social normsReproduction of oppressive social norms

ECONOMICS AND CHOICESECONOMICS AND CHOICES

Some argue that it is economically Some argue that it is economically irresponsible to bring a child with a irresponsible to bring a child with a disability into the world given the cost of disability into the world given the cost of future carefuture care

Public policy is always about choices-does Public policy is always about choices-does that extend to who we can ‘afford’?that extend to who we can ‘afford’?

INDIVIDUAL CHOICEINDIVIDUAL CHOICE

It is for the individual not the state to It is for the individual not the state to determine whether to have or what determine whether to have or what

characteristics the potential child will havecharacteristics the potential child will have

Designer babies?Designer babies?

But is the State neutral?But is the State neutral?

State determines what tests and research to State determines what tests and research to fundfund

Already limits choice with regard to sex selectionAlready limits choice with regard to sex selection

Practice influences choicePractice influences choice

‘‘Wrongful Birth’ threatWrongful Birth’ threat

Practice influences response and constructPractice influences response and construct– Insurance, availability of services, duty of the state?Insurance, availability of services, duty of the state?

ARGUMENTS AND ARGUMENTS AND PRESPECTIVES FROM THE PRESPECTIVES FROM THE

DISABILITY COMMUNITYDISABILITY COMMUNITY

SOCIAL CONSTRUCTION OF SOCIAL CONSTRUCTION OF DISABILITYDISABILITY

Disability is not an inherently negative trait, Disability is not an inherently negative trait,

but is the result of negative social but is the result of negative social attitudes and the processes and policies attitudes and the processes and policies which flow from themwhich flow from them

Therefore the elimination of fetuses with Therefore the elimination of fetuses with disability related traits is based on what disability related traits is based on what amounts to biased and misinformed ideas amounts to biased and misinformed ideas about the nature of disability and the lives about the nature of disability and the lives of people with disabilitiesof people with disabilities

THE EXPRESSIVIST THE EXPRESSIVIST ARGUMENTARGUMENT

– It is impossible to argue for the eradication of It is impossible to argue for the eradication of traits associated with disability without at the traits associated with disability without at the same time expressing negative attitudes same time expressing negative attitudes towards those who are currently living with towards those who are currently living with disabilities.disabilities.

– Can we argue for the elimination of certain Can we argue for the elimination of certain traits without at the same time reinforcing traits without at the same time reinforcing negative attitudes towards those who negative attitudes towards those who currently live with these traits?currently live with these traits?

TRAITS VERSUS TRAITS VERSUS PERSONSPERSONS

– Arguments for elimination of fetuses with Arguments for elimination of fetuses with disability related traits assumes that a disability related traits assumes that a single trait is equivalent to, or overwhelms, single trait is equivalent to, or overwhelms, the value of the person who carries the traitthe value of the person who carries the trait

IDENTITY TRAIT OR IDENTITY TRAIT OR DISABILITY?DISABILITY?

If disability is in part constitutive of our If disability is in part constitutive of our identity-an identity trait- can we justify identity-an identity trait- can we justify singling out this trait and not at the same singling out this trait and not at the same time justify elimination of other socially time justify elimination of other socially devalued traits like gender, hair colour etc..?devalued traits like gender, hair colour etc..?

Public Policy Questions:Public Policy Questions:

Is it plausible to both seek the elimination of Is it plausible to both seek the elimination of someone and subsequently accord them rights someone and subsequently accord them rights bearing status?;bearing status?;

Will this trend refocus public policy away from Will this trend refocus public policy away from addressing structural inequality and oppressive addressing structural inequality and oppressive social constructs?;social constructs?;

Will we continue to see a massive investment of Will we continue to see a massive investment of resources into ‘prevention’ of disability rather than resources into ‘prevention’ of disability rather than providing appropriate support for equal citizenship?providing appropriate support for equal citizenship?

IS THERE A PUBLIC POLICY IS THERE A PUBLIC POLICY RESPONSE?RESPONSE?

Restriction on testing is unlikely…but do Restriction on testing is unlikely…but do we need to fund it or increase its use? we need to fund it or increase its use? Equity?Equity?

Regulation of PDG a possibility?Regulation of PDG a possibility?

Can we make a list of ‘good and bad’ Can we make a list of ‘good and bad’ traits?traits?

ATTITUDES AND ATTITUDES AND INFORMATIONSINFORMATIONS

Unbiased information presented to prospective Unbiased information presented to prospective parent may reduce disability related terminationsparent may reduce disability related terminations

Better training for physiciansBetter training for physicians

Balanced Genetic counselingBalanced Genetic counseling

Involvement of people with disabilities and Involvement of people with disabilities and families in policy making and educationfamilies in policy making and education

Changing ableist norms and attitudesChanging ableist norms and attitudes

THANK YOUTHANK YOU

DIVERSITY DIVERSITY INCLUDESINCLUDES

timst@interchange.ubc.catimst@interchange.ubc.ca