Skip to main content
Series
The 5th ELSI Congress - ELSIcon2022

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

Type
Conference

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.

Tags

Keywords
Relative finding/matching
Genetic testing and screening
Paper
Pre-Recorded

Videos in Series

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 12

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 13

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 17

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 15

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Fresh Air for Genetic Data Sharing

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Moderated Plenary Panel

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 14

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 9

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 11

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 10

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Trainee Networking Session: Working with NHGRI

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Diversity’s Pandemic Distractions

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 6

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 5

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 8

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 7

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 4

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 3

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Toward an anthropology of rare disease

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: In the Shadows of Virtual Family Trees

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: ELSI and the New Precision Stewards?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The ELSI of Pandemic Biobanking

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Whose future should we worry about?

Related Videos