Donor-conceived adolescents' interest in obtaining information about their identity-release oocyte or sperm donor-results from the Swedish Study on Gamete Donation.

Abstract

Study question: Do donor-conceived adolescents in lesbian- and heterosexual-couple families intend to request information about their identity-release oocyte or sperm donor?

Summary answer: While more than half of adolescents intended to request donor information, being uncertain about making such requests was quite common, particularly among adolescents reporting better family functioning and those conceived with donor sperm in heterosexual-couple families.

What is known already: Increasing numbers of children conceived with identity-release gamete donation are approaching the age when they can obtain donor information, but there is very little knowledge about their perspectives regarding this possibility, particularly among those conceived with donor oocytes.

Study design, size, duration: The present cross-sectional survey study was conducted 2022-2023 as part of a longitudinal follow-up of lesbian- and heterosexual-couple families following identity-release sperm donation (SD-L, SD-H) or oocyte donation (OD-H). We approached parents in a total of 216 families with a survey and also requested their consent to contact their donor-conceived child, provided he/she was aware of the donor conception. Parents in 165 families participated in this follow-up and, among these, parents in 123 families (75%) also provided contact information to their child(ren). Out of 128 approached adolescents, 100 completed the survey (78% response rate). Following exclusion of four adolescents with known/directed donors, the study sample consisted of 96 donor-conceived children aged 13-16 years (47 SD-L, 27 SD-H, and 22 OD-H), most of whom had been aware of their donor conception from an early age.

Participants/materials, setting, method: The present study was based on the fifth wave of data collection of the Swedish Study on Gamete Donation, which used consecutive recruitment of recipient couples starting donation treatment 2005-2008. In Sweden, recipients of donor gametes receive no information about the donor. Only the donor-conceived person has the legal right, when sufficiently mature, to request information about the donor, including his/her identity. Study-specific items were used to assess adolescents' experiences and perceptions of disclosure issues, interest in requesting any donor information (identifying and/or non-identifying) as well as interest in contact with the donor and same-donor peers. Family relationships were assessed with the FAD GF6+ and study-specific items measuring perceived parent-child closeness and resemblance. Comparisons between the three donation groups (SD-L, SD-H, OD-H) were performed with χ2 test and Fisher exact test. Multinomial logistic regression analysis was performed in two separate models to investigate if the intention to request donor information was associated with family type (lesbian/heterosexual-couple) and with donation type in heterosexual-couple families (SD-H/OD-H).

Main results and the role of chance: More than half (58%) of adolescents intended to request information about the donor (as soon as possible or sometime in the future), while 1 in 10 had no such intention, and a third of adolescents were uncertain. Regression analysis showed no significant effect of family form (lesbian/heterosexual-couple) on the intention to request donor information, but better family functioning (FAD GF6+) was associated with being uncertain about making such requests (P = 0.036) (OR 0.19, 95% CI 0.04-0.90). The second regression analysis, restricted to adolescents from heterosexual-couple families, showed that those from SD-H families were more likely than OD-H adolescents to be uncertain about requesting donor information (P = 0.028) (OR 0.17, 95% CI 0.04-0.82), when controlling for gender, family functioning, and closeness with the non-genetic parent. The most common motivations for intending to request donor information were to look for resemblance to the donor and to learn about one's heritage, and one in five was motivated by a desire to contact the donor. The adolescents wanted to receive information about the donor's background (78%), identity (61%), and openness to being contacted (52%), with no significant differences between donation groups. In addition, a third of the adolescents were interested in contact with same-donor peers, irrespective of donation group or existence of siblings in the family.

Limitations, reasons for caution: Participants were recruited from a multicenter longitudinal cohort study of families following donor conception and achieved a high response rate among adolescents, but we cannot exclude the possibility of attrition bias with less well-functioning families opting out of the longitudinal study over time. Also, despite a relatively large study sample, small subgroups limit statistical power, and results should therefore be regarded with caution. Finally, the study was conducted in Sweden with mandatory identity-release donation, limiting generalizability to other contexts.

Wider implications of findings: Among young people who are aware of their conception with identity-release donation from an early age, a majority intend to obtain information about the donor. Type of donation and quality of family relationships seem to have relevance for adolescents' interest in seeking donor information, but more research is necessary. There appears to be a considerable variation regarding interest in different types of information, ranging from non-identifying characteristics to the donor's identity and openness to contact. These findings suggest that release of donor information should be adapted to the individual wishes of the donor-conceived person.

Study funding/competing interest(s): This study was funded by the Swedish Research Council (grant number 2021-03174) and Umeå University. The authors have no conflict of interest to declare.

Trial registration number: N/A.