“Your DNA is like your house, it’s as private as you can get,” said Sheldon Krimsky, professor of urban and environmental policy at Tufts University and author of the book “Genetic Justice.” “It has information about you, your family, your siblings. I think individuals, if given an understanding of what’s in their DNA, would have an expressed expectation of privacy.”
One proposal for how far privacy law should protect our DNA came recently from David Gusella, a third-year law student at Boston College. In an article in the Boston College Law Review in March, he pointed out that when police pick up abandoned DNA, there should be a clear limit to the information they can draw from it. They should be allowed to sequence it for traits related to appearance (because, he argued, we can’t reasonably expect our appearance to remain private when we step out in public) but not anything beyond that. Other scholars argue, however, that it’s more effective to set limits on when the police can even collect DNA—because once they have it, it’s unrealistic to imagine they will use some parts and not others.
While people are talking about law enforcement uses of abandoned DNA, there has been almost no debate about another potential risk: private individuals taking each other’s genetic material. Joh is one of the few scholars working on the issue. She argued in the Boston University Law Review in 2011 that sequencing someone else’s genome without consent should be classified as felony theft—a charge whose seriousness would help establish social and legal norms recognizing DNA as an exceptional kind of property.
Genetic material does enjoy some protections, in theory: Eleven states have genetic information laws that are written broadly enough to conceivably punish someone for sequencing another person’s genetic information without consent. (In 2011, Massachusetts legislators considered a sweeping Genetic Bill of Rights that would have protected abandoned DNA, but the legislation never became law.) But the penalties are minimal, and no cases have been brought under the laws.
Still, even if DNA theft by private citizens might sound like science fiction, it has happened. In 2002, film producer Stephen Bing was implicated in a paternity suit after private investigators hired by billionaire Kirk Kerkorian used DNA from Bing’s discarded dental floss to prove that he (and not Kerkorian) was the father of a young child. Similarly, in 2002 British police thwarted a scheme to use an attractive woman to take a strand of hair from Prince Harry—with the intention of using it to prove that he was not in fact Prince Charles’s son. In 2006, the United Kingdom became the first country to pass a law that made it illegal for private citizens to sequence another person’s DNA without permission.
Other potential abuses of abandoned DNA are currently possible but still untried. George Annas, a bioethicist Boston University, wrote in the New England Journal of Medicine about how abandoned DNA could be exploited by political campaigns to reveal embarrassing facts about their rivals. (Imagine the headlines that would have resulted if, in 1984, Democratic operatives had been able to show that Ronald Reagan carried the ApoE gene, which conveys a high risk for Alzheimer’s.)
Joh thinks that a first step in encouraging courts and legislatures to grant greater protection against unauthorized DNA analysis is to stop calling the genetic material “abandoned” in the first place. “People think, well, if it’s abandoned, why should I worry about it?” Joh proposes the more provocative label of “DNA theft.”
This semantic struggle points to an underlying challenge: We’re still just beginning to understand what DNA means to us. Is it just a molecule, or is it us? Until we have a better sense of what our DNA really tells us, what it can and can’t reveal about a person, it’s going to be hard to pin down exactly how it should be treated legally.
Given this still emerging picture, experts agree that privacy rights around abandoned DNA are unlikely to change anytime soon. Krimsky, for one, thinks it will probably take a scandal. “There hasn’t been a good enough case where there’s enough damage done,” he said. “I guarantee if there was a political candidate who had his DNA taken by a citizen and his political life is ruined, you’d see some action taken.”
Kevin Hartnett is a writer who lives in Ann Arbor, Mich. He can be reached at email@example.com.