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Adopted Individuals Seek DTC Genomics Services to Learn About Family History, Genetic Disease Risk

NEW YORK (GenomeWeb) – Adoptees signing up for direct-to-consumer genomic testing services often hope to fill the gaps in their family health history and genetic disease risk profile, but they do not differ from nonadoptees in the way they use the results to improve their health, according to a new study by researchers at Brigham and Women's Hospital and Harvard Medical School.

The analysis, led by medical geneticist Robert Green and published in Genetics in Medicine this week, used data from the Impact of Personal Genomics (PGen) Study, a longitudinal study of DTC genomic testing customers of 23andMe and Pathway Genomics that was not originally designed to compare adoptees and nonadoptees.

For their study, the researchers surveyed new 23andMe and Pathway Genomics US customers before and six months after they received their results and compared the attitudes, expectations, and experiences of adopted and non-adopted individuals.

Of the more than 1,600 study participants, 80, or 5 percent, were adopted. According to their survey results, obtaining ancestry information was a strong motivation for them to seek personalized genomics testing.

Adoptees were more likely to choose 23andMe than Pathway as their go-to service provider, possibly because 23andMe offers both ancestry information and a way of contacting other customers who turn out to be biological relatives.

Interestingly, adoptees were not more interested in learning about their genetic ancestry than nonadoptees.

Overall, adoptees were less concerned about the privacy of their genetic information than nonadoptees, possibly because they were actively trying to discover their genetic identity and "may be frustrated about the secrecy surrounding their biological family's genetic information and therefore be advocating for easier access to adoption (and genetic) records," the authors wrote.

Adoptees and nonadoptees used their genomics results in similar ways to make healthcare-related decisions, for example improving their diet or exercise habits, or to seek advice from medical professionals.

The authors cautioned that genomic testing results are "unable to replace a comprehensive family history assessment" and provide complementary rather than identical risk information. "It remains to be seen whether genetic risk predictions from [personalized genomic testing] can be useful in the absence of family history information," they wrote.

"Our results emphasize the need for further study of the long-term health impact on adoptees who receive genetic information, particularly addressing any harms or unjustified health-related actions arising from the disclosure of genetic-risk results," they concluded, which will require large, longitudinal studies.