awareness, attitudes, and beliefs about embryo donation and adoption: comparison of 2009 poll with...

Awareness, Attitudes, and Awareness, Attitudes, and Beliefs about Embryo Donation Beliefs about Embryo Donation

and Adoption:and Adoption:Comparison of 2009 poll with Comparison of 2009 poll with

2007 poll2007 poll

Reg Finger, MD, MPHReg Finger, MD, MPH

National Embryo Donation CenterNational Embryo Donation Center

in collaboration with in collaboration with

Harris Interactive, Inc.Harris Interactive, Inc.

Special Thanks to:Special Thanks to:

Jill Gress, Dana Bowers and Michelle Clark at Harris Interactive, Jill Gress, Dana Bowers and Michelle Clark at Harris Interactive, Inc. – for administering the poll on lineInc. – for administering the poll on line

Dr. Tom Gruen, Colorado Springs – for the results of the 2007 poll Dr. Tom Gruen, Colorado Springs – for the results of the 2007 poll and for permission to use identical questions and format for the and for permission to use identical questions and format for the 2009 poll2009 poll

Dr. Jeff Keenan and the staff of National Embryo Donation Center – Dr. Jeff Keenan and the staff of National Embryo Donation Center – for project oversight for project oversight

Dr. John van Regenmorter and colleagues at the Bethany Christian Dr. John van Regenmorter and colleagues at the Bethany Christian Services and Stepping Stones ministries – for facilitating the Services and Stepping Stones ministries – for facilitating the participation of their subscriber population participation of their subscriber population

Huntsville Reproductive Medicine, PC; Fertility Physicians of Huntsville Reproductive Medicine, PC; Fertility Physicians of Northern California; and Tulsa Center for Fertility and Women’s Northern California; and Tulsa Center for Fertility and Women’s Health – for facilitating the participation of their clinic patientsHealth – for facilitating the participation of their clinic patients

The 2103 qualified participants and several hundred more who The 2103 qualified participants and several hundred more who attempted to qualify for the on-line poll – for logging on and attempted to qualify for the on-line poll – for logging on and answering the questionsanswering the questions

Background and Background and ObjectivesObjectives

The primary objective was to find out whether The primary objective was to find out whether awareness of embryo donation and adoption had awareness of embryo donation and adoption had improved from 2007 to 2009, among:improved from 2007 to 2009, among: the general U.S. populationthe general U.S. population people diagnosed with infertilitypeople diagnosed with infertility people who subscribe to a Christian adoption-agency people who subscribe to a Christian adoption-agency

mailing listmailing list

We also surveyed a clinic-based group who had We also surveyed a clinic-based group who had embryos in frozen storage in 2009, to compare embryos in frozen storage in 2009, to compare their responses to the broader group of people their responses to the broader group of people diagnosed with infertilitydiagnosed with infertility

Survey MethodsSurvey Methods The polls were conducted from Aug 10 – Sept 4, 2007, and The polls were conducted from Aug 10 – Sept 4, 2007, and

from Aug 20 – Sept 24, 2009.from Aug 20 – Sept 24, 2009.

General Population Group: Respondents ages 18-45 from the General Population Group: Respondents ages 18-45 from the Harris general population database received an e-mail from Harris general population database received an e-mail from Harris Interactive with a link to a secure, password-protected Harris Interactive with a link to a secure, password-protected website where they completed the survey (2007 and 2009)website where they completed the survey (2007 and 2009)

Infertility Patient Group: Respondents ages 18-45 who Infertility Patient Group: Respondents ages 18-45 who previously identified themselves to Harris Interactive as previously identified themselves to Harris Interactive as having been diagnosed with a fertility problem received an e-having been diagnosed with a fertility problem received an e-mail from Harris Interactive with a link to a secure, mail from Harris Interactive with a link to a secure, password-protected website where they completed the password-protected website where they completed the survey (2007 and 2009)survey (2007 and 2009)

Survey Methods (cont’d)Survey Methods (cont’d)

Stepping Stones (a ministry of Bethany Christian Services) Stepping Stones (a ministry of Bethany Christian Services) subscribers received a letter or newsletter in the mail subscribers received a letter or newsletter in the mail informing them about the study and inviting them to log in to informing them about the study and inviting them to log in to the Harris Interactive website where they completed the the Harris Interactive website where they completed the survey on line. Website was not password protected, but only survey on line. Website was not password protected, but only Bethany affiliates received the specific link to the website, thus Bethany affiliates received the specific link to the website, thus being identified as a Bethany respondent (2007 and 2009). E-being identified as a Bethany respondent (2007 and 2009). E-mailed reminders were sent in 2009.mailed reminders were sent in 2009.

Clinic Patient Group: Patients identified by participating Clinic Patient Group: Patients identified by participating clinics as having embryos in frozen storage received a letter in clinics as having embryos in frozen storage received a letter in the mail with instructions the same as those for Bethany the mail with instructions the same as those for Bethany subscribers (2009 only)subscribers (2009 only)

Survey Methods (cont’d)Survey Methods (cont’d)

New respondent groups were selected in 2009. In the New respondent groups were selected in 2009. In the general population group, 4% surveyed in 2009 had also general population group, 4% surveyed in 2009 had also been surveyed in 2007. The rate of repeat responders in been surveyed in 2007. The rate of repeat responders in the other groups is unknown, but is likely to be somewhat the other groups is unknown, but is likely to be somewhat higher, especially for the Bethany group, which is drawn higher, especially for the Bethany group, which is drawn from a relatively stable mailing list. from a relatively stable mailing list.

Incentives: All respondents were entered into the Harris Incentives: All respondents were entered into the Harris Interactive monthly sweepstakes for a chance to win Interactive monthly sweepstakes for a chance to win $10,000. Respondents from this survey as well as other $10,000. Respondents from this survey as well as other Harris Interactive surveys completed in September were Harris Interactive surveys completed in September were eligible for the sweepstakes (2007 and 2009)eligible for the sweepstakes (2007 and 2009)

Numbers of ParticipantsNumbers of Participants

General General PublicPublic

Infertility Infertility PatientsPatients

Bethany Bethany SubscriberSubscriber

ss

Clinic Pts. Clinic Pts. With With

Frozen Frozen EmbryosEmbryos

20072007 996996 115115 736736

20092009 917917 226226 821821 139139

Demographics of Demographics of ParticipantsParticipants

The general public were not as familiar with the term “embryo The general public were not as familiar with the term “embryo adoption” in 2009 as in 2007. The reasons are unclear. adoption” in 2009 as in 2007. The reasons are unclear. However, awareness of the term gained ground among However, awareness of the term gained ground among

infertility patients. Clinic patients with frozen embryos had infertility patients. Clinic patients with frozen embryos had the same level of awareness as infertility patients generally. the same level of awareness as infertility patients generally.

Bethany subscribers maintained their very high level of Bethany subscribers maintained their very high level of awareness.awareness.

Familiarity with the term “embryo donation” remained Familiarity with the term “embryo donation” remained essentially unchanged from 2007 to 2009. The general public essentially unchanged from 2007 to 2009. The general public

and infertility patients recognize “embryo donation” more and infertility patients recognize “embryo donation” more readily than “embryo adoption”. Clinic patients with frozen readily than “embryo adoption”. Clinic patients with frozen embryos are much more familiar with “embryo donation”. embryos are much more familiar with “embryo donation”.

Bethany subscribers maintained their very high level of Bethany subscribers maintained their very high level of awareness of both terms.awareness of both terms.

In general, compared to 2007, more people in 2009 were In general, compared to 2007, more people in 2009 were hearing about embryo donation or adoption from sources hearing about embryo donation or adoption from sources other than the news media. Some of the increases were other than the news media. Some of the increases were significant (significant (greengreen).). Fewer Bethany subscribers heard of Fewer Bethany subscribers heard of

ED/EA from the media (ED/EA from the media (redred ). Still, only 55% of those ). Still, only 55% of those with with frozen embryos frozen embryos have heard of ED/EA from a healthcare have heard of ED/EA from a healthcare

professional. Unfortunately, the survey did not ask what professional. Unfortunately, the survey did not ask what sources “other” represented, making it more difficult to sources “other” represented, making it more difficult to

interpret the gains in this category.interpret the gains in this category.

Gen Gen Pop Pop 20072007


InfertiInfertil 2007l 2007


Clinic Clinic 20092009

BethanBethany 2007y 2007

BethanBethany 2009y 2009

News MediaNews Media 58.458.4 58.158.1 52.252.2 50.950.9 40.340.3 54.654.6 45.745.7

Infertility Infertility AssociationAssociation 2.92.9 5.85.8 31.331.3 33.233.2 45.345.3 56.556.5 62.462.4Healthcare Healthcare ProfessionalProfessional 3.63.6 5.25.2 22.622.6 36.736.7 55.455.4 29.829.8 34.334.3Infertility Web SiteInfertility Web Site 2.92.9 5.55.5 24.324.3 35.435.4 33.133.1 49.649.6 61.861.8Infertility Support Infertility Support GpGp 2.22.2 2.22.2 11.311.3 20.420.4 18.718.7 26.826.8 31.331.3Booklets or Booklets or BrochuresBrochures 5.85.8 8.98.9 20.020.0 29.229.2 38.138.1 49.649.6 53.753.7Med Journals or Med Journals or BooksBooks 8.08.0 11.511.5 17.417.4 20.820.8 21.621.6 19.819.8 24.424.4Friends or FamilyFriends or Family 13.213.2 20.820.8 15.215.2 23.023.0 26.626.6 31.831.8 31.431.4OtherOther 5.15.1 41.441.4 5.45.4 28.828.8 20.120.1 13.913.9 31.831.8

Percent of Population That Heard of ED/EA From This Source

From 2007 to 2009, persons are tending increasingly to prefer From 2007 to 2009, persons are tending increasingly to prefer the language likely to be used in the settings in which they the language likely to be used in the settings in which they

learn about embryo donation or adoption. Bethany/Stepping learn about embryo donation or adoption. Bethany/Stepping Stones writers favor the term “embryo adoption”, so it follows Stones writers favor the term “embryo adoption”, so it follows

that their readers would mirror that preference. Clinic that their readers would mirror that preference. Clinic patients with frozen embryos, like infertility patients patients with frozen embryos, like infertility patients

generally, favor “embryo donation”.generally, favor “embryo donation”.

Attitudes Toward Use of Frozen Attitudes Toward Use of Frozen EmbryosEmbryos

(strongly or somewhat agree with statement)(strongly or somewhat agree with statement)

Embryo donation is endorsed by a strong majority of all the Embryo donation is endorsed by a strong majority of all the populations, as a general principle. However, support wanes populations, as a general principle. However, support wanes as the questions become more personal and direct. Patients as the questions become more personal and direct. Patients who actually have frozen embryos are less comfortable with who actually have frozen embryos are less comfortable with either donating to another couple or donating to research, either donating to another couple or donating to research,

than infertility patients generally (see than infertility patients generally (see green green cells)cells). . Likelihood that respondents would tell family or friends about Likelihood that respondents would tell family or friends about donating their embryos took a steep dive from 2007 to 2009. donating their embryos took a steep dive from 2007 to 2009.

Bethany subscribers are more supportive than others of Bethany subscribers are more supportive than others of ED/EA at all levels.ED/EA at all levels.


Gen Gen PopPop20092009

Gen Gen Pop Pop 20092009w/ Infw/ Inf

Infertil Infertil 20072007

Infertil Infertil 20092009

Clinic Clinic 2009 2009

BCS BCS 20072007

BCS BCS 20092009

E/VL Donat ResearchE/VL Donat Research4242 48.48.

1145.945.9 4444 4646 32.432.4 1111 11.211.2

Donat good use of embsDonat good use of embs7070 71.71.

6686.986.9 9090 82.382.3 76.376.3 9494 96.396.3

Sh be donat wh not Sh be donat wh not neededneeded 5959 57.57.

4460.760.7 6969 67.767.7 51.851.8 8686 84.384.3

E/VL Donat CoupleE/VL Donat Couple4242 43.43.

7765.665.6 5252 52.252.2 35.335.3 6767 69.769.7

Ev Ser Consid DonatEv Ser Consid Donat 3535 3333 57.457.4 4949 46.946.9 3636 5959 59.159.1

E/VL Tell Fam/FriendsE/VL Tell Fam/Friends4545 29.29.

114141 6464 36.736.7 34.534.5 6161 48.448.4

Percent of Population Giving Positive Response to Item

With embryo adoption, as with donation, endorsement of the With embryo adoption, as with donation, endorsement of the option becomes less likely as the question becomes more option becomes less likely as the question becomes more

personal and immediate. Responses also differ depending on personal and immediate. Responses also differ depending on how the question is asked. “Ever seriously consider using a how the question is asked. “Ever seriously consider using a

donated embryo” elicits more positive responses than donated embryo” elicits more positive responses than “Extremely or very likely to consider embryo adoption”. “Extremely or very likely to consider embryo adoption”. Bethany subscribers are much more open to ED/EA than Bethany subscribers are much more open to ED/EA than

others, and some have gone through the adopting of embryos others, and some have gone through the adopting of embryos already.already.


Gen Gen PopPop20092009

Gen Gen Pop Pop 2007 2007 w/ Infw/ Inf

Gen Gen Pop Pop 20092009w/ Infw/ Inf



Clinic Clinic 2009 2009

BCS BCS 20072007

BCS BCS 20092009

Donat gd use of Donat gd use of embsembs 7070 71.71.

6686.986.9 9090 82.382.3 76.376.3 9494 96.396.3

Ev Ser Consid Ev Ser Consid UsingUsing 2828 1111 19.719.7 3030 29.629.6 28.128.1 5757 54.654.6

E/VL to Consider E/VL to Consider EAEA 9.59.5 9.19.1 20.820.8 1818 17.417.4 19.919.9 26.26.

6641.41.22

39.39.55

Considered Step Considered Step EAEA 1313 19.719.7 1010 12.812.8 14.714.7 4141 41.641.6

Taken Step EATaken Step EA 22 1.61.6 00 00 00 99 5.55.5

Percent of Population That Would Consider/Considered/Took This Step

Attitudes About Policies Related toAttitudes About Policies Related toEmbryo DonationEmbryo Donation

(strongly or somewhat agree with requirement)(strongly or somewhat agree with requirement)

Attitudes About Policies Related toAttitudes About Policies Related toEmbryo DonationEmbryo Donation

(strongly or somewhat agree with policy)(strongly or somewhat agree with policy)

Percentage of Respondents Percentage of Respondents withwith

This Concern About Donating This Concern About Donating EmbryosEmbryos

**

* - interval change p< .05


This Concern About Adopting This Concern About Adopting EmbryosEmbryos

*




*



*

*




*




**


As donor, percentage As donor, percentage

considering it important to considering it important to ……

As recipient, percentage As recipient, percentage considering it important to …considering it important to …

Percentage With Enough Info for Decision about Embryo Donation

(question asked only of those with diagnosis of infertility)

Most Important ConcernsMost Important Concernsof Respondentsof Respondents

For potential donors, the medical and psychological status of For potential donors, the medical and psychological status of the recipients leads the listthe recipients leads the list

Concerns of potential donors have waned somewhat in the two-Concerns of potential donors have waned somewhat in the two-year periodyear period

For potential recipients, cost concern leads the listFor potential recipients, cost concern leads the list Prospective recipients are concerned about the medical and Prospective recipients are concerned about the medical and

psychological history of donorspsychological history of donors Religious, ethical, and long-term social concerns are not highReligious, ethical, and long-term social concerns are not high Concerns about birth defects and infectious disease Concerns about birth defects and infectious disease

transmission are higher than one might suspect given the low transmission are higher than one might suspect given the low probability of these complicationsprobability of these complications

With a few notable exceptions, the concerns of the different With a few notable exceptions, the concerns of the different populations surveyed are more alike than different populations surveyed are more alike than different

Summary and Summary and ConclusionsConclusions

The awareness of the term “embryo adoption” is down The awareness of the term “embryo adoption” is down 4% in the general population (maybe due to different 4% in the general population (maybe due to different sampling “draw”) but gained 5 percent in the Harris sampling “draw”) but gained 5 percent in the Harris infertility panel. Awareness remained high in the infertility panel. Awareness remained high in the Bethany group. Bethany group.

Awareness of the term “embryo donation” is unchanged.Awareness of the term “embryo donation” is unchanged. People are hearing about ED/EA from professional People are hearing about ED/EA from professional

sources more in the last two years than before. People sources more in the last two years than before. People are hearing about ED/EA from the news media less often, are hearing about ED/EA from the news media less often, perhaps because it has been four years since the 2005 perhaps because it has been four years since the 2005 White House media event on embryo adoption.White House media event on embryo adoption.

Summary and Summary and Conclusions Conclusions (continued)(continued)

There is good agreement with the “core” items of ED policy: There is good agreement with the “core” items of ED policy:

required counseling and eligibility restrictions on required counseling and eligibility restrictions on recipients. Enthusiasm for requiring a home study waned recipients. Enthusiasm for requiring a home study waned from 2007 to 2009. from 2007 to 2009.

A high percentage of respondents endorse ED/EA as a A high percentage of respondents endorse ED/EA as a “good thing to do”, but successively smaller percentages “good thing to do”, but successively smaller percentages would consider participating, have considered participating, would consider participating, have considered participating, and have actually participated.and have actually participated.

Compared to infertility patients generally, clinic patients Compared to infertility patients generally, clinic patients with remaining embryos were less cost-conscious, and less with remaining embryos were less cost-conscious, and less likely to donate either to other couples or to researchlikely to donate either to other couples or to research

Cost concerns and concerns about donor and recipient Cost concerns and concerns about donor and recipient medical and psychological histories were more medical and psychological histories were more significant than concerns about long-term family significant than concerns about long-term family dynamics, or ethicsdynamics, or ethics

Degree of openness desired was approximately Degree of openness desired was approximately balanced between prospective donors and recipients; balanced between prospective donors and recipients; there was much more support for input into the match there was much more support for input into the match than there was for ongoing contactthan there was for ongoing contact

Considerable numbers of infertility patients, clinic Considerable numbers of infertility patients, clinic patients with embryos, and adoption agency patients with embryos, and adoption agency newsletter subscribers still lack adequate information newsletter subscribers still lack adequate information about embryo donationabout embryo donation

Summary and Summary and Conclusions Conclusions (continued)(continued)

Thank you!Thank you!

I will be happy to respond to I will be happy to respond to any questions at this time.any questions at this time.

awareness, attitudes, and beliefs about embryo donation and adoption: comparison of 2009 poll with...

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