ELSIcon2022 Paper: Family Secrets Revealed: Experiences and impacts of participating in direct-to-consumer genetic relative-finder services

ELSIcon2022 • Paper • May 27, 2022

Christi Guerrini, Jill Robinson, Cinnamon Bloss, Whitney Bash Brooks, Stephanie M. Fullerton, Brianne Kirkpatrick, Sandra Soo-Jin Lee, Mary Majumder, Stacey Pereira, Olivia Schuman, Amy McGuire

It is estimated that more than 37 million profiles currently populate the major direct-to-consumer genetic testing (DTC-GT) databases. Most DTC-GT companies offer customers an opportunity to identify genetic relatives among other consenting customers based on shared DNA via genetic relative-finder services (GRFS). The outcomes of participating in these services are often portrayed as generally harmless, potentially interesting, and sometimes delightful. However, as genetic genealogy databases expand and are able to match customers to more and more immediate genetic relatives, the odds that they will learn surprising and possibly distressing information about their families are increasing.
In 2020, we conducted an exploratory survey of 23,196 GRFS participants and found that 82% had identified a new genetic relative, while 61% had discovered something unexpected about themselves or their family—for example, that the person they thought was their biological parent is not or that they have a sibling they had not known existed. The majority of respondents who learned new information reported the consequences for themselves to be net neutral or positive (74%). However, some reported net negative consequences (2.5%), not feeling like themselves (1%), or feeling worse about themselves (1%). 
This presentation will report survey results, examine the potentially complex impacts of these discoveries on participants and their families, and explore how DTC-GT companies and health professionals can help support individuals as they explore the most basic questions of their existence: who they are and where they come from.