'I have to remind myself that everyone's search is different': experiences and outcomes of searching and not searching for donor connections among donor conceived adults
Two-thirds of UK donor-conceived adults find genetic connections, but study shows search process brings unexpected emotional challenges
Zadeh, S., Jones, C., & Jadva, V. (2024). 'I have to remind myself that everyone's search is different': experiences and outcomes of searching and not searching for donor connections among donor conceived adults. Human Reproduction, 00, 1-12. https://doi.org/10.1093/humrep/deae210
Geographic Region: United Kingdom
Research Question: What are the experiences and outcomes of donor-conceived adults who are actively searching for, open to contact with, or not searching for donor connections?
Methods: Mixed-methods cross-sectional survey study. Online survey with closed and open-ended questions about experiences of donor conception, searching for connections, and finding or not finding connections. The survey was developed in consultation with staff and volunteers from two major UK community organizations: the Donor Conception Network (DCN), which serves donor conception families, and the Donor Conceived Register Registrants’ Panel (DCRRP, now Donor Conceived UK), which represents donor-conceived people. Before launch, five donor-conceived individuals pilot-tested the survey. Data were analyzed both qualitatively and quantitatively.
Sample: 88 donor-conceived adults in the UK (39 actively searching, 44 open to contact but not actively searching, 5 not searching). Mostly female (74%) and sperm donor conceived (90%). Participants ranged in age from 18 to 70 years (average age 34). The sample was nearly entirely white (99%), predominantly heterosexual (74%), non-religious (76%), and highly educated (68% held an undergraduate degree or higher). Most participants (84%) had been conceived by a heterosexual couple; 60% had siblings other than donor siblings. The majority of participants found out about the study through the DCRRP (51%) or DCN (25%).
Key Findings:
Active searchers and those open to contact did not differ on any demographic characteristic, including age, gender, sexual orientation, family type at conception, education, or employment status. The two groups also did not differ in when or how they learned about being donor-conceived, how often they discussed their donor conception, or whether they belonged to a support organization.
Active searchers rated interest in their genetic history higher than those open to contact and rated genetics as more important to their sense of identity. The differences were statistically significant. Both groups gave high ratings overall, but active searchers’ ratings were more uniformly at the top of the scale.
Active searchers rated genetic information as more important to their identity than those open to contact but not searching. Active searchers were more likely to use genetic testing and social media to search compared to those open to contact but not actively searching. These differences were statistically significant.
Reasons for actively searching or not searching for donor connections fell into three main themes: identity and belonging, family relationships, and having found connections.
I am keen to find out my identity, who am I really? (Active searcher, not connected)
I am curious about all sorts, not least of all myself. (Open to contact, connected)
I am comfortable with my identity, and I belong to such a supportive family that I do not feel the need to expand my family in that way. (Not searching, not connected)
I’m looking for people like me—this is because I spent my early life feeling alone and different within my family. (Active searcher, connected)
I am open to making connections because I did not grow up with siblings, and do not have any close cousins. I am curious about similar traits a donor sibling may have. Finding a donor sibling would be interesting, but I would not be really upset if I could not find any. (Open to contact, not connected)
I am not interested in having contact with my donor or donor siblings. I have a family that I love and hardly have enough time to see them as it is. I don’t feel the need to connect with the donor side of my family ...I’m open to feeling differently in the future but at this time in my life it is not something that interests me. (Not searching, connected)
67% of all participants had found or been found by a donor connection, with no difference between active searchers and those open to contact.
Experiences of searching and finding/not finding connections were varied, characterized by: 1) uncertainties in searching and relating to connections, 2) viewing searching as an open-ended process, 3) different experiences with different donor connections, 4) expectations not always matching reality, 5) searching acting as a catalyst for changing feelings, and 6) comparing experiences to other donor-conceived people. The paper provides a number of quotes from each group to illustrate the themes.
Participants expressed a range of positive and negative emotions about finding or not finding connections. Some felt disappointed or alienated when unable to find connections, while others felt neutral or relieved. Making connections sometimes led to challenges in navigating new relationships. The paper provides a number of quotes from each group to illustrate the themes.
Limitations: The sample was predominantly female, white, and sperm donor–conceived, as is typical in donor conception research. The group of participants who were not searching was very small (n = 5), making it impossible to draw meaningful statistical comparisons with this group. The authors acknowledge that people who are genuinely disinterested in donor connections are unlikely to participate in research on this topic. Most participants were recruited through donor conception community organizations, introducing potential selection bias toward those who are already engaged with the donor conception community.
Applications: This study shows that variability in interest in searching should be expected. People’s reasons for searching—or choosing not to—are legitimate and varied. Mental health providers should be prepared to support people across all three search orientations, including those who do not wish to search but may be found by donor siblings through DNA testing platforms. Mental health providers working with donor-conceived people could ask about search status and feelings about searching as part of routine care.
Funding Source: UK Economic and Social Research Council
Lead Author: Sophie Zadeh is a Reader in Family Psychology in the School of Psychology at the University of Sussex. Her research is focused on the experiences and outcomes of family diversity, with a specialism in families formed through donor-assisted conception (e.g., sperm donation, egg donation, and surrogacy).
Regulatory Context
Human Fertilisation and Embryology Authority (HFEA) serves as independent regulator overseeing fertility treatment and research using human embryos. It was established by the Human Fertilisation and Embryology Act 1990 and amended in 2008.
Fertility treatment is provided at both NHS and private licensed clinics. Single women, female same-sex couples, and heterosexual couples all have equal legal access to fertility treatments, including donor conception. Since 2013, all women qualify for fertility services regardless of marital status or sexual orientation.
Donor anonymity law changed in 2005. Donors who registered after April 1, 2005 must be identifiable. Donor-conceived individuals born from donations after this date can request identifying information (name, date of birth, town of birth, last known address) once they turn 18. For those conceived before April 2005, donors are anonymous unless they have chosen to re-register as identifiable.
If both the donor-conceived person and their half-sibling(s) are on the HFEA Register and request information, the HFEA can tell them whether they’re genetically related. Anyone over 16 can ask the HFEA this question.
The 10-family limit restricts the number of families that can be created from a single donor at UK licensed clinics; this limit applies to both UK donors and imported donor sperm.
Donors can only be compensated for verified expenses: £750 per cycle for egg donors and £35 per clinic visit for sperm donors. Only altruistic donation is permitted.