Last week European scientists were shamed into cutting off public access to a genome sequence. As far as I know, it’s the first instance of a genome pulled from the public record.
It’s also a bad precedent.
The case involves a line of cervical cancer cells, known as HeLa. As told in the book The Immortal Life of Henrietta Lacks, a bestseller by reporter Rebecca Skloot, the HeLa cell line came from the body of Henrietta Lacks, a poor African-American tobacco farmer. The cells were collected without Lacks’s knowledge, and later researchers did even more dodgy research involving her children.
Lacks died of her cancer in 1951, but HeLa went on to become a big deal in science. In fact, it is the “most widely used model cell line” for studying human biology. That’s according to some German researchers who, on March 11, decided to expand that knowledge by publishing the HeLa genome.
The publication set off a tizzy of criticism online, tracked here by researcher Jonathan Eisen. Although no law required the Germans to ask permission from Lacks’s family, it seemed in very poor taste not to have done so, especially given the notoriety of the case. Eventually Skloot, whose book is being made into a movie by Oprah Winfrey and HBO, got involved. She briefed the Lacks family and conveyed their concerns to the scientists, who then agreed to put a block on the data.
In her write-up of the episode for the New York Times, Skloot quotes one of Lacks’s granddaughters, Jeri Lacks-Whye, as telling her: “That is private family information … It shouldn’t have been published without our consent.”
Private information? Whatever the past injustices the Lackses have suffered, that’s just entirely wrong. There is no law here or in Germany (that I know of) that lets anyone put a claim on the DNA information of another person.
Even what right you have to your own DNA information isn’t settled. Some states have sought to pass laws that attempt to define DNA as personal property. That way, no one could surreptitiously collect yours and publish it. Eric Topol, a doctor at the Scripps Institute, tweeted at me to say, “Individuals should own their own DNA data!”
I could see the argument for that. But letting family members lay such a claim doesn’t make sense. It would mean you’d have to ask your mother, or your uncle, before you disclose your own DNA data. And what about long-gone ancestors? Light a candle and ask them, too.
The HeLa situation also muddles the difference between consent and privacy. But in fact, the muddle is all too real. Consent—the kind never obtained from Lacks—is an explicit agreement to participate in research, usually anonymously. Recently, it’s become popular to show just how worthless those promises of anonymity are when it comes to genome research.
The reason is that once you have someone’s DNA code, it’s possible to find out who they are by plugging snippets of it into genealogical databases, where other relatives, even distant ones, have uploaded information about themselves (see “Study Highlights the Risk of Handing Over Your Genome”)
And so it’s not just the HeLa genome that’s at risk. It’s every genome where a promise of anonymity was given. Right now, you or I could start trolling some of the world’s most famous, foundational research and connect the dots to subjects and their family members.
Part of what bothers me about this situation is that we’ve seen similar kerfuffles over old Indian bones and bio-prospecting in the Amazon. The outcome in both instances has been laws that restrict science for unscientific reasons. These stories always begin the same way: some researcher in yellowing photographs who didn’t tell anyone why he wanted those cells, seeds, or funerary urns. But later, someone conversant in both science and local causes of aggrievement (say, superstitious beliefs) puts two and two together and … I gotcha!
It’s true the HeLa genome could tell you something intimate about Lacks and, thus, her descendants. From the voluminous genetic data about HeLa already online, it can be determined that Lacks had recent African ancestors. You could also probably figure out if Lacks had, say, some disease susceptibility gene, which her granddaughter would then have a 25 percent chance of sharing, too.
Many of the first people to have their DNA decoded, like scientist J. Craig Venter, purposefully made their genomes public. They wanted to dispel unreasonable anxieties. The genome is nothing to fear. More public data is good for society.
Now, by asserting a privacy right that doesn’t exist, and getting the genome taken down, I think Skloot and the Lackses are paddling in the opposite direction.
What’s your opinion? Tell me in the comments below. If you want to show solidarity with the Lacks family, there’s also a foundation that raises money via PayPal to pay for their unmet needs, like medical and school bills.
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