Pulling HeLa from Public Domain Sets a Bad Scientific Precedent
We believe this article gets it.
Few important quotes -
The HeLa situation also muddles the difference between consent and privacy.
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 isnt 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 doesnt make sense. It would mean youd 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.
Part of what bothers me about this situation is that weve 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 didnt 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!
Its 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 doesnt exist, and getting the genome taken down, I think Skloot and the Lackses are paddling in the opposite direction.
