Issue link: https://tmcpulse.uberflip.com/i/1089662
t m c » p u l s e | m a r c h 2 0 1 9 9 Both McGuire and Roberts cited news stories about individuals who discovered their ancestry traces back to a group toward which they harbored animosity, but that the information led to more toler- ance or positive change. While some people are happy to embrace a whole new culture, others choose to maintain what they've always known, Roberts said. "I think that we really don't know how to deal with these things until we have more experience with them," she said, "which makes it exciting but also creates unanticipated risks." Disease risk and reactions Perhaps highest among those risks is the burden of health information, which may include a predispo- sition to certain diseases. Individuals don't always give much thought to what it might mean to learn that they are predisposed to, say, Alzheimer's. "I worry about people going in unwittingly and getting health information without realizing what they're getting—especially for those buying the test to get their genetic ancestry and deciding to throw in the health screen as an added bonus," McGuire said. "It's the very subtle ways in which having this information might change how we think about our- selves, how other people think about us, or how we live our lives. How, on a psychological level, are we going to handle this information?" McGuire, who had her own genome sequenced, hosted a TEDMED Talk about her decision at the time to not find out her results. She already knows that certain diseases run in her family—her mother has Parkinson's and her grandfather had Alzheimer's—but she wasn't ready to get the results until she could be sure that whatever they were, they wouldn't change how she lives her life. "I know that I'm at risk because I have family his- tory, but I wondered how I was going to feel if I had a genetic predisposition to a serious disease. Might I think about myself differently? Would I expect dif- ferent things of myself? That's what I worried about, but I think it's a very individualized thing." ➟ Sometimes, unexpected ancestry infor- mation can be more upsetting than getting unanticipated health risk information, because it can really disrupt family relations. Some of those well-kept secrets that people thought they'd go to their grave with are no longer sustainable. — AMY McGUIRE, J.D., PH.D. Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine