It's hard to keep a family secret these days, thanks to the rise of direct-to-consumer (DTC) genetic genealogy services. One of the largest studies on DTC genetic testing experiences and outcomes, led by researchers at Baylor College of Medicine, has found that discoveries about relatives are quite common and the consequences of those discoveries can be far reaching. The findings are published in the American Journal of Human Genetics.
"If you're going to participate in one of these services, you should be ready to learn something about your family that you weren't necessarily expecting to learn," said Christi Guerrini, co-first author and assistant professor at the Center for Medical Ethics and Health Policy at Baylor.
The researchers surveyed customers of genetic relative finder services, such as those offered by AncestryDNA and FamilyTreeDNA, and found that out of more than 23,000 survey respondents, nearly half, 46%, said they participated in genetic testing out of general curiosity, not a specific intention to find a relative. Yet, 82% of those surveyed reported learning the identity of at least one genetic relative. Further, 61% of respondents said they learned something new about themselves or their relatives, including potentially disruptive information such as learning they were adopted or donor conceived. Three percent of those surveyed learned that the person they thought was their biological parent was not, and 5% learned about the existence of full or half siblings.
When asked about the overall consequences of test results, the vast majority of respondents reported no consequences or overall positive or neutral consequences for themselves, and most did not regret their decision to participate in testing. Some participants reported making changes to their lives that were described in positive terms, such as making improvements to their health or embracing new cultural activities. But a small percentage of respondents reported that their discoveries had a negative impact on their lives and their sense of self. A greater proportion of those who learned that the person they believed to be a biological parent is not reported negative consequences and regretted participating in testing.
"The outcome of learning about a relative may depend on a number of factors-for example, whether newly discovered family members are receptive or whether the discovery leads to estrangement with known family," Guerrini said. "Looking ahead, it's really important that mental health and social support resources are available to help individuals cope with their experiences."
"As the popularity of direct-to-consumer testing continues to grow, it's crucial that we understand the experiences of people using these products and provide support as they explore the most basic questions of their existence: who they are and where they come from." said Dr. Amy McGuire, senior author and Leon Jaworski Professor of Biomedical Ethics and director of the Center for Medical Ethics and Health Policy at Baylor. "We hope to continue to better understand the complex social, cultural and psychological impacts of genetic testing and ancestry research on society and individuals."
Jill Robinson, research manager at the Center for Medical Ethics and Health Policy, is co-first author of the study. Other authors from Baylor are Whitney Bash Brooks, Dr. Mary Majumder, Dr. Stacey Pereira and Olivia Schuman. Dr. Cinnamon Bloss, Dr. Stephanie M. Fullerton, Brianne Kirkpatrick and Dr. Sandra Soo-Jin Lee also contributed. They are from University of California San Diego, University of Washington School of Medicine, Watershed DNA and Columbia University. See the publication for a full list of funding for this research.
