Factors associated with searching for people related through donor conception among donor-conceived people, parents, and donors: a systematic review

Abstract

Objective

To review the body of literature to summarize the existing knowledge about factors that shape gamete donor linking and discuss their implications for clinical care and future research. Recent changes in policy, practice, and technology have made it possible for individuals connected through donor conception—donor-conceived (DC) people, parents, and donors—to find and contact one another.

Evidence Review

A bibliographic search of English, French, German, Spanish, and Dutch language peer-reviewed publications was performed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines using the electronic databases PubMed, EMBASE, and Web of Science Core Collection. The inclusion criteria were as follows: original empirical research with quantitative, qualitative, or mixed methods; research participants were DC people, gamete donors, and/or parents interested in searching for people (genetically) related to them through gamete donation; and a substantial part of the article focused on searching for or an interest in contacting donor-related people. The exclusion criteria were as follows: publications other than original peer-reviewed research and publications on known donors and surrogacy. Methodological quality was assessed using the Critical Appraisal Skills Program checklist for qualitative studies and the Joanna Briggs Institute Critical Appraisal Checklist for quantitative studies. Eligibility assessments, quality assessments, and data extraction were independently performed by 2 teams, with disagreements resolved by discussion.

Results

An initial search yielded 4,040 publications, of which 119 articles were full-text screened and 47 studies were included for review. The studies were diverse in design, setting, recruitment methods, data collection, and stakeholder groups. The DC people, parents, and donors of the studies included had an interest in each other; however, their motives, desired information, and/or expectations regarding their interest and/or seeking contact differed. Among the participants in the studies, the interests of the DC people, parents, and donors were intertwined and not necessarily in conflict. Methodological limitations of the included studies were identified.

Conclusion

Donor linking occurred in a complex array of several factors: psychosocial, sociodemographic, relational, and environmental variables. Further research is needed to better understand the relative influence of these variables and identify the psychosocial needs of the different groups. Preliminary findings showed that stakeholders can have an interest in an ongoing contact. However, the studies’ methodological shortcomings limited the extent to which these findings could be applied to all people interested in donor-related contact. Follow-up research is needed on what happens after parties are linked.