Do You Really Want to Know What’s in Your Genome?

The state of the universe.
May 21 2013 5:45 AM

Who's Your Daddy?

The perils of personal genomics.

(Continued from Page 2)

23andMe asks for two layers of consent before it shows family relationships. First, users are given the chance to turn off the "relative finder" function, which shows relations as close as second cousins. Less than 1 percent of the site's customers choose to opt out. The rest are given the chance to click through to see their "close relatives," and about 40 percent proceed. It's the people in this latter group who may uncover a case of nonpaternity.

This quirky system shows the difficulties that arise in managing genomic data. It used to be that people chose to learn about themselves or not, and doctors helped determine which bits of information were appropriate for each of us to know. Now we're heading for a place where secrets flow more freely, where wise consumers must play defense with the facts.

A certain gene might increase the risk for a certain kind of cancer; that's easy to assimilate. But what about the data points that tell us how we fit in with our families? And how does this relate to our changing sense of what it means to have a family at all? "We are living in an awkward interval where our ability to capture the information often exceeds our ability to know what to do with it," said NIH director Francis Collins last summer, in an interview with Gina Kolata of the New York Times. Science is getting personal. Medicine is getting personal. Information is getting personal. That means each of us will have to figure out a personal approach to the swelling stream of data. At some point, all of us may have to decide: Do I want to know the truth or not? Am I a Jackie or an Alex?

Advertisement

As time went by, Jackie found some satisfaction in her newfound knowledge. Her lack of closeness with her father wasn't from some failing on his part or on hers, she thought; it wasn't cause for guilt or shame or disappointment. It was only nature. Their relationship had been doomed by mismatched nucleic acids. "I didn't connect with my dad, and now it makes sense," she says. "It's fine. It is what it is."

Jackie doesn't plan to tell her father what she knows. There's no point in hurting him, she says. If they were closer, maybe they would need to have a conversation; but then again, if they were closer, the truth might be more painful still. For now, she's decided not to bring it up, and she won't mention it again to her brother Alex or her mom.

She's been searching for descendants of her biological father, though, and reaching out to his relatives on Facebook and Ancestry.com. A distant cousin passed along a family history that her grandfather, Emmet, typed out in 1964, after five years spent sifting through state archives and church registers. The painstaking document traces Jackie's ancestors back to Norway across 17 generations—an early analog to her own project of self-discovery done through spit analysis and social media. "His attitudes sound just like mine," she says, referring to Emmet's urge to look into his background. "I can tell you that before this whole experience, I would have told you that I believed more in nurture than nature, but since then I've seen how strong nature is."

Some people seem to have this inborn curiosity, a need to dig into their pasts. (A future version of 23andMe might tell you if you're the type of person who would be interested in 23andMe!) Now those people have a better tool for excavation—and when 1 million customers start to pick away, they're sure to tap a heavy vein of secrets.

If this is good or bad it's hard to say. Near the bottom of his history, Emmet jotted down some thoughts that Jackie says she shares exactly: "Many people when discussing genealogy comment that we should let the sleeping dead lie," he wrote almost 40 years ago, "and the other cliché heard so frequently is the warning to be careful lest you turn up a horse thief. The trouble with the first saying is that the sleeping dead just don't lie; something of them is with each of us, dormant or dominant."