In August and September 2022, U.S. Donor Conceived Council (USDCC) asked people with a connection to donor conception (i.e., donors, recipient parents, and donor conceived persons) what changes to the donor conception industry and practices they would like to see. USDCC shared the survey in several online communities and with multiple stakeholder groups. The results of the survey are summarized below. USDCC will use the survey results to help inform its current and future advocacy work.
483 people responded to the survey. The majority of respondents live in the United States (83%). The respondents included donors, recipient parents, and donor conceived people:
- 249 donor conceived people (“DCP”) (52%)
- 169 recipient parents (“RP”) (35%)
- 92 donors (19%)
Of the 92 donors who responded, 54% were sperm donors and 46% were egg donors.
Respondents also included members from diverse communities, including people who identity as BIPOC, LGBTQIA+, and people with disabilities:
- 156 LGBTQIA+ (32%)
- 29 Disabled (6%)
- 28 BIPOC (6%)
Scoring/Ranking of Priority Issues
Respondents were asked to choose and rank the five most important issues. Results by type of respondent are below in Table 1.
DCP, RPs, and donors ranked screening donors for genetic health issues and establishing a national registry for DCP to find their donor siblings in their top five issues. There was also broad support for providing educational counseling to intended parents, establishing a global family limit for donors, and allowing DCP to learn the identity of the donor before age 18.
Table 1: Ranking Top Issues by Respondent Type
Respondents were asked to score 10 issues on a scale of 1 to 5. The results by type of Respondent are in Table 2.
DCP, RPs, and donors scored screening donors for genetic health issues very highly (average 4.81 out of 5). DCP, RPs, and donors also all scored educational counseling for intended parents and donors very highly (more than 4.5 out of 5).
Table 2: Scoring of Issues by Respondent Type
Respondents were also asked more specific questions about certain issues. These included questions about the age of identity release, the number of families per donor, and the minimum donor age. The results of these questions are in Table 3 and discussed more fully below.
Table 3: Additional Questions About Priority Issues
1. Donor Identity Release
There was substantial support for donor identity release before age 18. Support ranged from 80% (donors) to 63% (RPs that identify as LGBTQIA+).
Among all respondents, most supported identity release before the age of 12. Sixty percent of DCP, 58% of donors, and 56% of RPs supported identity release by age 12. This corresponds to adolescence when identity formation is an important part of human development.
Among those who supported donor identity release before age 18, 5.1 years old was the average age at which DCP should be able to learn the identity of the donor.
2. Family Unit Limits
There was also broad support for reasonable limits on the number of families per donor. Most DCP, RPs, and donors supported a limit of less than 10 families per donor.
Specifically, 93% of DCP, 80% of RPs, and 54% of sperm donors supported a limit of 10 families per donor.
DCP supported a significantly lower limit on families per donor than RPs and donors. The average family limit was 7.1 for DCP, 12.1 for RPs, and 17.5 for donors.
3. Donor/Sibling Registry
As stated above, DCP, RPs, and donors all selected establishment of a national registry for DCP to find their donor siblings as a top 5 issue.
Respondents were asked whether they supported creation and operation of the registry by the government, individual banks/clinics, an independent organization, or the assisted reproduction industry as a whole.
Most respondents supported either the assisted reproduction industry or an independent organization being required to create a central registry that all banks and agencies must use. Specifically, 66% of DCP, 64% of RPs, and 66% of donors supported either of these options.
4. Psycho-Educational Counseling
DCP and donors scored educational counseling of donors and intended parents as a high priority issue (4.5 to 4.7 out of 5). RPs scored educational counseling of intended parents above 4 out of 5.
5. Donor Screening/Qualifications
There was consensus among all respondents about the importance of screening donors for genetic health issues (average 4.81 of 5) and verifying the donor’s self-reported medical information (4.73 out of 5).
DCP and RPs scored psychological screening of donors highly (4.62 of 5 for DCP and 4.51 of 5 for RPs). Donors scored psychological screening of donors above 4 out of 5.
Respondents were also asked if they “believe it is important for banks to conduct criminal background checks on donors” and what the banks should look for and disclose to intended parents.
More than 84% of DCP, RPs, and donors agreed that such background checks should include sex offenses. More than 64% of DCP, RPs, and donors agreed that background checks should include criminal convictions. And more than 52% of DCP, RPs, and donors agreed that background checks should include incarceration records.
Minimum Donor Age
All types of respondents supported a minimum donor age of more than 21. The average donor minimum age was approximately 23 years old, which corresponds to the average age of a new college graduate in the United States.
Finally, respondents were asked if any other issues should be added to the list of priority advocacy issues (free form response).
About 10% of respondents suggested adding three additional issues: a mechanism for people to learn that they are donor conceived, medical history updates from donors, and support/counseling services for donor conceived people.
Future surveys will endeavor to obtain more responses from sperm donors, people who identify as BIPOC and/or disabled, and DCP raised by LGBTQIA+ parents, and members of the general public.
Top Image by Lukas Blazek via Unsplash