THE REAL YOU
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told a different story. She is actually also 25 percent Japanese. Two generations later, I am about 15 percent Korean and 10 percent Japanese, with about 5 percent of random East Asian genes mixed in—math that only works due to chromosomal crossover. While my immediate family took the news with interest and acceptance—after all, as my dad pointed out, you can literally see Korea from Japan—it was information that wasn’t especially welcomed by my older Korean relatives, all of whom harbor understandable animosity toward the Japanese after a long history of conflict between the nations and cultures. We debated telling my 92-year-old grandmother at all, or simply withholding the information. One of my great uncles hasn’t spoken to my dad since he mentioned the genetic discovery, highlighting one of the possible hazards of getting your DNA analyzed—finding out that you are literally your own worst enemy. The next ancestry surprise landed in my email inbox months later, when a stranger named Derek Dohrman sent me a message simply titled, “Fam?” It was from a computer programmer about my age who shared 1.56 percent of my analyzed segments, making him a probable second or third cousin. I referred him to my mom, who in addition to being a biologist is also a genealogy buff who has traced our family tree back hundreds of years. My mom looked at Derek’s DNA results as well as the results of his father, David. For a geneticist, the conclusion was black and white:
“David shares a little more than 10 percent of genetic variants with me,” my mom explained. “So if you backtrack, his mother would have shared a fourth with me. While we haven’t proven anything, it’s pretty obvious that Derek’s grandmother was my half-sister.” It was a piece of information that fit into what we had already pieced together. David’s mother, Shirley, who passed away 15 years ago, was adopted and never knew her biological parents. My grandfather lived in Shirley’s hometown of Flint, Michigan, at the time she was born. My mom suddenly had a half-sister. All of us suddenly had new blood relatives. Finding out I am one-tenth Japanese and that I had an aunt I never knew were certainly interesting facts, as was finding out my mitochondrial DNA traces my heritage back to the ancient Sami reindeer herders 40,000 years ago. But the real treasure is that these discoveries led to conversations with my family members, and those conversations led to stories. My dad told me about my great grandfather who lost everything after the Japanese invaded Korea in 1910. He immigrated to Hawaii after reading an advertisement that said he could get rich there, but then spent the rest of his life working on sugar cane plantations in poor conditions, exploited for cheap labor. My mom told me about my grandfather’s life before he was a Louisiana farmer with eight kids, when he worked in a GM factory in Flint before he was fired for dancing all
“ It opens your mind up. There’s no reason to be so clannish or us-versus-them. We’re all related. It’s arbitrary and temporary to group ourselves or label ourselves. It’s made me a little bit more open. ” 14 | RN&R |
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night and being late for work—not once, but twice. Possibly, we know now, he was dancing with a woman who became pregnant and gave their baby up for adoption. In these cases, the DNA information resulted not in an epiphany, but rather acted as a prompt. It was a gateway into stories I would have otherwise never heard. While a lot of people refer to DNA analysis as a way to find missing puzzle pieces, I found that my DNA results simply encouraged me to appreciate the puzzle.
Window to the future The far more controversial half of DNA testing is the health results. Based on research conducted around the world—including some research involving data from 23andMe participants—the website outlines your health risks, your possible drug interactions, toxicity and response issues, and your likely inherited conditions. For example, my biggest health risk is a 20.8 percent chance of being diagnosed with breast cancer during my lifetime, almost twice the risk of the average woman. The U.S. Food and Drug Administration heavily restricted DNA testing health results in 2014 and 2015 but has allowed 23andMe to share modified health results beginning again this year. The reason for the restrictions have been twofold. The FDA required 23andMe to prove its health results were accurate (and accurately portrayed), and they were concerned users of the service did not have enough knowledge or information to understand or process their results. Telling someone they have a genetic marker associated with colitis, for example, is very different than having colitis, developing colitis in the future, or passing colitis on to your children. When I asked my mom what she thought were the biggest drawbacks of getting your DNA tested, she echoed the second concern. “For people who don’t have much of a science background,
they might jump to conclusions,” she said. “They might just assume they’re going to get a disease. They might not talk to their doctor about it. They might become depressed about it. Or they might start demanding expensive tests. It is not as simple as it used to be. It’s not like Mendelian inheritance with big Bs and little Bs like you learned in high school. The interactions of genes and proteins can throw everything off. You might have one marker that counteracts another marker. Our DNA is doing a lot more than most people have any idea.” The main concern posed by critics of direct-to-consumer genetic testing is that there is no requirement for a doctor to be involved—no one to interpret or explain your results, no one to guide your medical decisions after analyzing your traits and risks, no one to tell you the difference between a diagnosis, a trait or a risk, not even someone to explain the extent of your risk, which can be more difficult to understand than it first appears. While doctors are now offering DNA analysis and being trained to interpret and use the information, it is not a mandatory component of testing. The 23andMe platform now tries to combat these issues by educating its users, which can be a challenge since what we know about genetics changes literally by the day. When I clicked on my 20.8 percent risk for breast cancer, for example, I was sent to a page with links to support groups, genetic counselors and additional DNA tests specific to breast cancer. I also saw detailed information about my risk—of eight breast cancer markers, I had an increased risk for cancer based on six markers and decreased risk for two. The page also reminded me that getting breast cancer is only an estimated 27-40 percent genetic. Under that reminder is a list of steps I could take to protect myself, from maintaining my weight and limiting alcohol intake to avoiding hormonal birth control. I suddenly felt a huge, new accountability for my health. Now that I knew I was at risk for breast cancer, would I feel guilty every time I gained 5 pounds or ordered a pint of beer? If I do get diagnosed with breast cancer, will I feel that it was 60-73 percent my fault? I also experienced some of the fear that many have raised about personalized medicine: Could this or other genetic information be used against me? I gave 23andMe permission to use my information for research, but how could others use it in the future? Could having breast cancer markers affect the price of my health insurance or my status in society or even my daughters’ abilities to find partners or have children? While some of these concerns edge toward conspiracy theory, there are real questions about how raw DNA data will be used 10 or 20 or 100 years from now.
