By Jess Goulart
Photo courtesy of Daniel R. Blume.
If you could know that you’ll most likely die from cancer, would you want to?
23andMe is a genetic testing company that will analyze your DNA and tell you about your ancestry, your body, your health, and even what you may likely die from. If that freaks you out, you’re not alone. That said though, recent research has shown that people who complete genetic testing and receive bad news are able to cope and make better informed life decisions.
Photo courtesy of Andres Monroy Hernandez.
23andMe’s genetic test is mail in, easy, painless, and costs only $100. You literally swab your saliva, send it back to them, and within a few weeks receive a detailed genetic profile. Once you’re in the system, 23andMe automatically updates with new information about your specific genes as it is discovered. With its increased ease and cost-effectiveness, widespread availability of genetic testing is no doubt at our doorsteps, begging the question, how will this change us?
Nikola Danaylov is a political commentator who runs the popular scientific weblog, Singularity.com, exploring issues in artificial intelligence and exponentially growing technologies such as computer science, genetics, robotics, and nano-tech. Danaylov tested himself with 23andMe a few years ago and provided a detailed entry about his experience, which he tells BTR is “one of the most popular blog entries ever on Singularity, especially in the last few months.”
Danaylov decided to do 23andMe because his family history is riddled with young deaths, pancreatic cancer, and diabetes. “Knowledge is always better than ignorance,” he says, “and that knowledge can provide focus and extra motivation to make necessary changes.”
Except for learning he has a higher-than-average chance of developing obesity, his results were mostly good news. Armed with that information, he can now make better decisions regarding nutrition and activity level.
Danaylov tells BTR that when he told his family he was going to get tested, his sister-in-law said she’d rather not know her odds of getting breast cancer. Even despite the fact that breast cancer disease that runs in their family. Such is her choice, but what if her partner insisted she get tested before they thought about having kids with her? As genetic testing becomes more and more pervasive, will it factor into who we choose to start a family with?
“The issue is two-fold, ethical and technical,” Danaylov says. “Technically, it will happen – it’s pretty much already here. In another 5 years a full genome test [now around $2,000] will probably cost under $50. Inevitably, this will impact relationships, so the ethical issue is should we make a decision on somebody’s genetic information or not? It’s hard to judge and harder to generalize, and it will probably happen on a case by case basis.”
In vitro babies already allow parents to pre-select certain traits for their children by examining embryos and choosing the one that has the best odds for the desired genetic makeup. Though public reaction was strongly divided when the technology was first introduced, the practice has since become commonplace. With affordable access to 23andMe and in vitro, the argument can be made that prospective parents have the ethical obligation to get tested for debilitating genetic diseases and, should they present themselves, cherry pick genes through in vitro so that their kids don’t inherit them.
23andMe has already changed other facets of family dynamics. Jill Uchiyama, a film-maker based out of Boston who creates documentaries that explore untold legacies, tells BTR 23andMe helped her find a family.
“I was adopted,” Uchiyama says, “and it was a closed adoption so I have never had access to any of my information or closest relatives.”
Four years ago, Uchiyama saw an article by Harvard Professor Steven Pinker that mentioned 23andMe and decided to try it. You can check out footage of her providing her sample and sharing her thoughts on the process below:
Uchiyama gained valuable insight into her body (she can’t easily break down caffeine and scored higher than average for narcolepsy) and a sense of what conditions or diseases run in her family – but that wasn’t the best part.
“The genealogy report has a feature called ‘relative finder’ which links you to everyone else in their database that is related to you. So all of a sudden, literally in one day, I went from being related to no one to having three hundred cousins. I was shocked. I started to reach out to every single one of them.”
Furthering that sense of connectedness, 23andMe also assigns you a haplogroup, telling you which of several ancient tribes your ancestry originates from.
Uchiyama recommends the service to everyone, adopted or not, saying “this kind of work actually brings you into a deep history about yourself like nothing else can. Your DNA holds thousands and thousands of years of information and that’s different from visiting a museum and looking at a map. This is real, actual proof of your connection to whatever tribe. They can even tell you what percentage Neanderthal you are. In a country where we still have a lot of people that don’t believe in evolution, I think it’s key for people to know this and to see it as a beautiful thing.”
Of course, not everyone is using 23andMe to assuage fears or locate family. Jesse Mellon, a web/UI designer out of San Diego, got tested through 23andMe several years ago out of a general curiosity. He’s already married and has an eight-year-old son, and though he finds the information fascinating, he doesn’t see it as a necessity.
“I’d be interested for my son to be tested, but I’m not seeing a pressing need for him to do so,” he says, “I’ll let him make that decision for himself.”
Both Mellon’s wife and mother have been tested, and though it “paints a more complete genealogical picture,” they see it as more of a novelty than anything else.
Younger generations will probably be the ones to grapple with the tougher ethical questions, like whether genetic testing should be a requirement akin to school vaccinations.
Jake Andraka, the 16-year old science prodigy deemed the “boy wonder” after he invented a cheap and fast early detection test for pancreatic, ovarian, and lung cancer, tells BTR he thinks people should know what they are genetically prone to so they can take steps to prevent the disease and help society’s health as a whole, but they should always be given the choice.
“I would be anxious to see if I’m going to get some horrible genetic disease later in life, however, then I can do the research about it and try to change my future instead of just accepting it.”
Though he recognizes its growing prominence, Andraka does not consider genetics the end all in determining one’s fate, thus, he says, genes shouldn’t factor into choosing a partner or one’s decision to have children.
“I’m very wary that you walk a thin line when you begin to genetically alter offspring or select partners based on genetics, because genetics doesn’t determine everything. Circumstances don’t define you; it’s what you do with your circumstance that defines you.”
The sentiment isn’t surprising coming from a 9th grader who submitted the design for his cancer test to 200 Universities and got 199 rejections before John Hopkins finally agreed to fund his research.
So is 23andMe right for you? For now, the choice is yours alone, but if there is small chance that knowing you will develop cancer means you can take steps to prevent it, wouldn’t you want to?
“Some people try to hide from these technologies,” Danaylov says, “they stick their head underground like an ostrich, because they are afraid. But I say knowledge is power, and I strongly believe that everyone should get tested. Just imagine that hiding from this… it could cost you your life.”