I’ve been tied to the genealogy community ever since I can remember. My dad was always into it — for decades, he collected old documents and photos, and went on fact-finding trips to libraries and cemeteries, all to fill in the holes of his ever-expanding family tree. As I’ve written about before, I’ve had trouble wrapping my head around his obsession. Why spend so much time digging up the past?
But I may be in the minority. Genealogy is a booming business, with an estimated 84 million people worldwide spending serious money on the hobby.
As it turns out, the industry owes a big part of its recent success to a technology that I’m quite invested in: genetic testing. Several dozen companies now sell DNA tests that allow customers to trace their ancestry. This technology can show you, for example, how closely you’re related to Neanderthals, or whether you’re part Native American or an Ashkenazi Jew. But the technology can just as easily unearth private information—infidelities, sperm donations, adoptions—of more recent generations, including previously unknown behaviors of your grandparents, parents, and even spouses. Family secrets have never been so vulnerable.
My latest story is about the rise of this so-called “genetic genealogy” and how it has forced some people to confront painful questions about privacy, identity, and family. The story is out today in MATTER, a new publication for long-form narratives about big ideas in science and technology.
The star of my story is Cheryl Whittle, a 61-year-old from eastern Virginia who graciously invited me into her home and into her extended family. Cheryl took her first DNA test in 2009, and what happened after that is a story with lots of twists and turns, joys and sorrows. You’ll have to go read the story to see what I mean — Here you can read a teaser, or buy the whole 10,000 words for just $.99.
One of the things I loved about reporting this story was seeing how genetic technology is being integrated into the lives of people who aren’t all that interested in science. Here’s a quick video of Cheryl, for example, explaining — in fluent genetic lingo — how to compare her 23 pairs of chromosomes to someone else’s using the online service of 23andMe, a popular genetic testing company:
Thanks to genealogy hobbyists like Cheryl, genetic databases are growing larger every day. And this raises some important issues regarding privacy and ethics. It’s plausible that in the not-too-distant future, we’ll all be identifiable in genetic databases, whether through our personal contribution or that of our relatives. Is that a good thing? A bad thing?
I’ve heard a wide range of answers to these questions. A couple of months ago I asked my father’s first cousin, John Twist, who has been an avid genealogist for decades, whether he had bought any DNA tests to further his research. Genealogists tend to have a sharing mentality, so his response surprised me. He wrote:
I have NOT sent in my DNA. I would have, perhaps, earlier, but now with the revelations of Big Brother, I just don’t want to. I read that they caught the BTK killer in Kansas City (?) through his daughters pap smear. AND, in an article I read yesterday from MIT (?) a fellow said he’d rec’d an anonymous DNA sample and was able to identify the person who’d given it through Ancestry – well, something like that.
My own views tend to fall on the other side of the spectrum. I’m keen on the potential benefits of direct-to-consumer genetic testing, whether it’s used for estimating your medical risks or unearthing family secrets. That said, the full range of its legal and ethical implications has not yet come to light.
Dov Fox, an assistant professor of law at the University of San Diego who specializes in genetic and bioethical issues, told me that it’s only a matter of time before genetic genealogy leads to lawsuits regarding fidelity, paternity, and inheritance. But it’s unclear, for now, how the law will handle those cases.
Here in the U.S., there aren’t any federal privacy statutes that would apply, Fox says. The U.S. Genetic Information Nondiscrimination Act (GINA), passed in 2008, says that health insurers and employers cannot use an individual’s genetic information to deny medical coverage or to make employment decisions. But genetic genealogy doesn’t have anything to do with medical risks. That means lawyers will have to get creative in how they present their cases.
“What happens often with advances in science and technology is that we try to shoehorn new advances into ill-fitting existing statutes,” Fox says. So genetic genealogy cases might hinge upon laws originally written for blackmail, libel, or even peeping Tom violations.
Maybe it’s not all that surprising that genetic genealogy, a new technology, hasn’t ironed out its privacy standards yet.
“When telephones were first becoming widely adopted, you couldn’t just dial someone directly. An operator would put your call through and often listen to the call,” says J. Bradley Jansen, Director of the Center for Financial Privacy and Human Rights in Washington, D.C., and the founder of the Genealogical Privacy blog. When a technology is new, its novelty trumps any privacy worries. That was true for Facebook, too: At the beginning, everyone shared everything with abandon. “But as technologies mature, privacy, which had been a luxury, becomes an essential commodity,” Jansen says.
I hope he’s right.
And I hope you like the story, now up at MATTER.