Family secrets: Experiences and outcomes of participating in direct-to-consumer genetic relative-finder services

• Published in: American journal of human genetics 2022-03, Vol.109 (3), p.486-497
• Main Authors: Guerrini, Christi J., Robinson, Jill O., Bloss, Cinnamon C., Bash Brooks, Whitney, Fullerton, Stephanie M., Kirkpatrick, Brianne, Lee, Sandra Soo-Jin, Majumder, Mary, Pereira, Stacey, Schuman, Olivia, McGuire, Amy L.
• Format: Article
• Language: English
• Subjects: adoption; ancestry; direct-to-consumer genetic testing; Direct-To-Consumer Screening and Testing; donor conception; Exploratory Behavior; family secrets; Genetic Testing; Humans; misattributed parentage; non-paternity event; Pedigree; relative matching; Surveys and Questionnaires
• ISSN: 0002-9297; 1537-6605
• DOI: 10.1016/j.ajhg.2022.01.013

In recent decades, genetic genealogy has become popular as a result of direct-to-consumer (DTC) genetic testing. Some DTC genetic testing companies offer genetic relative-finder (GRF) services that compare the DNA of consenting participants to identify genetic relatives among them and provide each participant a list of their relative matches. We surveyed a convenience sample of GRF service participants to understand the prevalence of discoveries and associated experiences. Almost half (46%) of the 23,196 respondents had participated in GRF services only for non-specific reasons that included interest in building family trees and general curiosity. However, most (82%) also learned the identity of at least one genetic relative. Separately, most respondents (61%) reported learning something new about themselves or their relatives, including potentially disruptive information such as that a person they believed to be their biological parent is in fact not or that they have a sibling they had not known about. Respondents generally reported that discovering this new information had a neutral or positive impact on their lives, and most had low regret regarding their decision to participate in GRF services. Yet some reported making life changes as a result of their discoveries. Compared to respondents making other types of discoveries, those who learned that they were donor conceived reported the highest decisional regret and represented the largest proportion reporting net-negative consequences for themselves. Our findings indicate that discoveries from GRF services may be common and that the consequences for individuals, while generally positive, can be far-reaching and complex.