TMC PULSE

t m c » p u l s e | m a r c h 2 0 1 9 11 the limitations of their technology. According to information published by 23andMe, their test is not designed to analyze for certain conditions associated with repeats, insertions, rearrangements or deletions in DNA, of which Huntington's is included. Context and privacy To further muddy the ethical waters, the interpreta- tion of results in direct-to-consumer genetic kits can be misleading because the tests provide only partial information about overall health. Environment and lifestyle choices play key roles in health, but those factors are not often highlighted in the literature accompanying the kits. "When you're looking at things like breast and ovarian cancer, it matters what your family history is, it matters what your personal history is, and it needs to be put into context," McGuire said. "When you're just getting this information from a direct- to-consumer test, oftentimes without input from a genetic counselor or a clinician, the contextual information may not be fully there. That doesn't mean that people can't go and get that contextual information—and I hope they do—but it's not built into the system necessarily." Testing for variants in the BRCA gene, for example, underscores some of the system's potential flaws. Hundreds of variants in that gene could indi- cate an increased risk for breast cancer, but most of the direct-to-consumer companies test for only the most common two or three variants. "Just because you don't have the variants they are testing for doesn't mean you don't have any BRCA variants," McGuire said. "Some people worry that consumers are not going to fully appreciate that information and think they're safe or that they don't need to be as diligent with their mammograms." Privacy is another sleeping giant that genetic testing has provoked. Most testing companies use the genetic data they acquire for large health databases and to sup- port research. Law enforcement, though, uses the information to solve crimes. In April of last year, investigators arrested Joseph James DeAngelo for rapes and murders committed in the 1970s and 1980s after using a public genealogy website to connect evidence from the crime scenes to DeAngelo's distant relatives. The "Golden State Killer" is one of many cold cases solved with help from genetic databases, prompting conversations around ethical and privacy concerns. And in February, FamilyTreeDNA became the first commercial testing company to voluntarily provide law enforcement with access to user data. Still, there are some safeguards in place for individuals. In 2008, Congress passed the Genetic Information Nondiscrimination Act, which bars health insurers from denying coverage or charging higher premiums to people based on genetic pre- disposition. It also prohibits employers from even requesting a person's genetic information, much less using the results to make decisions related to employment or job status. Despite all the risks and surprises that come with genetic testing, many people believe that it is their right to know their genetic information—no matter what it reveals. "When I first started doing this work over 10 years ago, one of the things that I wrote about was the potential to form a genetic identity—that we might have some sort of identity tied to our genetic information the way we do to, say, our race or culture or gender or religion," Roberts said. "As we see genetic testing becoming more widespread and we gain the ability to learn even more from our genetics about our relationships and our health and our ancestry, the possibility of a genetic identity is becoming something that's very real." So far, research suggests that uncovering these genetic secrets—no matter how life-altering they may seem—is a positive experience for most. "An early concern was that providing all of this information about disease risk would make people anxious; some worried they would get depressed, but we've actually found that that's not true," McGuire said. "We've done studies and people don't suffer clinical anxiety or depression after getting results. We're pretty adaptable as human beings, and we generally do well with this information." Jessica Roberts, J.D., directs the Health Law & Policy Institute at the University of Houston.

• Cover