Whom does your DNA belong to? Hint, it鈥檚 not just you.
When you submit your DNA to a personal genomics company like Ancestry or 23andme, you鈥檙e not just uncovering secrets about yourself, but potentially about other people.
That鈥檚 what Dani Shapiro聽learned after she spat into a tube and sent it to Ancestry for testing.
鈥淚t really was very much in the spirit of a lark,鈥� says the novelist and memoirist. 鈥淚t was just this recreational feeling of, 鈥極h, maybe we鈥檒l discover second cousins or third cousins.鈥欌��
Why We Wrote This
At their best, home DNA tests offer consumers a chance to learn more about themselves and where they came from. But privacy advocates caution that society has yet to fully grapple with the implications of making that information so publicly available.
What she found instead challenged her very sense of self.
As Ms. Shapiro describes in her bestselling memoir, 鈥�Inheritance: A Memoir of Genealogy, Paternity, and Love,鈥� published in January, the DNA test found that she was only half Ashkenazi Eastern European, not the 100% that she had always thought. And there was a name that she didn鈥檛 recognize, identified as a first cousin. The truth was unavoidable: The man who raised her was not her biological father.
鈥淚t鈥檚 like the lights blinked on,鈥� she says. 鈥淎fter the initial shock and disruption and disorientation, things about myself that I had not understood became very clear.鈥�
Ms. Shapiro鈥檚 discovery illuminates the two faces of home DNA testing: Genetic information, by its very nature, cannot exist in isolation. Any secrets that you uncover in your own genes will also be uncovered in those genes you share with others. As home testing becomes increasingly popular, with tens of millions of kits sold each year, society is only beginning to feel the tension between consumer freedom and collective privacy. 聽聽
In Ms. Shapiro鈥檚 case, she determined that her parents, who had since died, had sought treatment at a fertility clinic in 1961. At the time, a common practice in male infertility cases was to mix donor sperm 鈥� typically that of medical students 鈥� with that of the intended father. Donors were promised anonymity, records were destroyed, and parents were instructed to pretend it never happened.
And yet, despite all the clinic鈥檚 efforts to purge evidence and maintain ambiguity, Ms. Shapiro managed to track down her biological father, a retired physician with a wife and three children, in just 36 hours.
鈥淚t really didn鈥檛 take any kind of expert anything,鈥� she says. 鈥淚t took Facebook and Google and a couple of hunches.鈥�
Ms. Shapiro鈥檚 biological father, whom she describes as a 鈥渧ery private guy,鈥� never submitted his genetic information to Ancestry or any other genealogical DNA testing service. But one of his many nephews did, and that was all Ms. Shapiro needed.
Bring the whole family
This spillover effect is prompting some observers to suggest that the way we frame genetic privacy is too individualized to account for the ways that DNA binds us together.
鈥淥nline genetic testing really exposes these connections between people,鈥� says Jennifer King, the director of consumer privacy at Stanford Law School鈥檚 Center for Internet and Society.
鈥淲hen you make this individual choice to upload a genetic sample to a site, you鈥檝e brought along everybody you鈥檙e directly related to, as well as potentially your current or future children and grandchildren, and presumably you have not asked any of those people for their consent.鈥�
So far, more than 26 million people have taken a home DNA test, with as many people purchasing kits in 2018 as in , according to a report by MIT Technology Review.
The business is dominated by two companies: Ancestry, based in Lehi, Utah, and 23andme, based in Mountain View, California. And around them has spawned a cottage industry of smaller companies that let users upload their raw DNA data from Ancestry or 23andme in exchange for the identities of long-lost relatives or for what are claimed to be genetically personalized tips on , , and even .
A published in the journal Science last year looked at one such free database, GEDMatch, which contains the profiles of 0.5% of the U.S. population, and found that it could be used to identify 60% of Americans of European descent. With 2% of the U.S. population, this figure would increase to more than 90%, the researchers found.
Nothing to hide?
Last year, authorities in California used information from GEDMatch to track down and convict the U.S. Navy veteran and former police officer Joseph James DeAngelo, the so-called Golden State Killer who committed at least 13 murders and more than 50 rapes in California in the 1970s and 1980s.
Mr. DeAngelo himself had not submitted his DNA to any service, but, just as with Ms. Shapiro鈥檚 biological father, that wasn鈥檛 necessary. A profile of one of the killer鈥檚 relatives was in the database, and that was all that law enforcement needed.
Since then GEDMatch has become the de facto DNA database for law enforcement, leading to dozens more cold-case arrests for rape and murder.
But Dr. King worries that, when these databases make users鈥� genetic profiles available to law enforcement, a slippery slope lies ahead. 鈥淚 should be able to opt out of that,鈥� she says. 鈥淥therwise we start opening up a world where you have law enforcement able to engage in fairly intrusive searches of innocent people without any burden of proof. ... You start moving from serial killers to traffic tickets.鈥�
鈥淧eople who think that they have nothing to hide usually have a lot of social advantages that other people don鈥檛,鈥� she adds.
Far-reaching effects
Internationally, the picture grows even more complicated, as policies set in one country could have impacts on the other side of a globe.
Owned by a Chinese holding company, the for-profit Genomics Medicine Ireland Ltd. announced last November that it planned to build a database in Ireland, about 6% of the island鈥檚 population. Because the Irish are more to each other than are other European populations, such a database would contain information about a huge proportion of the Irish citizenry.
But it doesn鈥檛 stop there. From the middle of the 19th century up through the 1980s, Ireland experienced a massive emigration of its population. Ireland鈥檚 emigrants and their descendants are thought to number some 70 million.
鈥淏ecause the diaspora is so large, you can then make some fairly educated guesses on an international level,鈥� says R贸is铆n Costello, a privacy researcher at the Long Room Hub Arts & Humanities Research Institute at Trinity College in Dublin. 鈥淭hat鈥檚 obviously extremely concerning.鈥�
Like Dr. King, Ms. Costello suggests that the way we tend to frame privacy as an individual right, one that each customer can negotiate on their own with a corporation, has the potential to erode the greater good.
鈥淭here鈥檚 no sense that privacy might be in fact a collective good that can be collectively eroded by small individual actions that cumulatively build to a societal impact that is much greater than that,鈥� says Ms. Costello.
Like Facebook, but for DNA
Dr. King notes that there are currently few legal restrictions in the United States on how DNA testing companies can use your data. 鈥淩ight now, I would say they鈥檙e being fairly conservative and not doing things like selling it and not using it for advertising purposes,鈥� she says. 鈥淏ut there鈥檚 no reason why they couldn鈥檛 do that in the future.鈥�
Most experts agree that new rules are needed to clarify how personal genetic information can and cannot be used, but to do so you first need to determine what rules already exist, which is itself no small task. But as of last month, a team of lawyers, doctors, and other scholars say they have completed it. Created by the University of Minnesota and Vanderbilt University, the three-year, $2 million project is a searchable database of every federal and state law, regulation, and official guideline currently regulating the field of genomics, marking the first step toward a more comprehensive genetic privacy regime.
Katie Hasson, a researcher at the Center for Genetics and Society, draws a comparison between the business models of genetic testing companies with that of Facebook, whose reputation has suffered in recent years following revelations about the ways in which the social network monetizes users鈥� profiles.
鈥淎 few years ago, it seemed really innocuous to put your friends and your likes and whatever daily happenings on Facebook,鈥� she says. "Now ... we鈥檙e seeing that when your personal information is monetized by private companies, it's used for all kinds of things that you didn鈥檛 want. The effects can go beyond what you would imagine.鈥�
Certainly one of these effects, one unimagined by earlier generations, is that the concept of anonymous sperm donation is quickly becoming incoherent, making about as much sense as the concept of anonymously sharing your social security number.聽聽
鈥淲hat stuns me is that in 2019 there are still anonymous sperm donors and anonymous egg donors. That is absurd,鈥� says Ms. Shapiro. 鈥淭hey can鈥檛 be anonymous. They won鈥檛 be anonymous.
鈥淢y biological father did not do a DNA test,鈥� she says. 鈥淲e鈥檙e all identifiable and findable.鈥�
