Public genomics, privacy, and James Watson

3 minute read

Another thing I didn’t expect to see today: DeCode Genetics went looking through James Watson’s genome sequence for evidence of African ancestry:

A new analysis of Dr. Watson's genome shows that he has 16 times the number of genes considered to be of African origin than the average white European does -- about the same amount of African DNA that would show up if one great-grandparent were African, said Kari Stefansson, the chief executive of deCODE Genetics of Iceland, which did the analysis.
Dr. Stefansson's company is one of several marketing genome scans that promise to reveal anyone's genetic propensities for disease, origins and more, for a price. Dr. Watson had already placed his own genome information online, as has another genetics pioneer, J. Craig Venter. Dr. Stefansson said he simply ran the data through his company's analytical system.
Dr. Stefansson said that because his company had not produced the original data, "I am reluctant, personally, to make much of the analysis." He added, however, that "on my face, it would elicit smiles."

I find this very strange. Not that Watson may have a mixed ancestry – ultimately, everyone’s ancestry is mixed.

No, I find it strange that the leader of one of the major genetics firms in the world is cheerily showing one of the worst possible abuses of personal genomics, in the most high-profile way possible! I find it just flabbergasting.

Someone might argue that Watson’s genetic ancestry is legitimately related to the story about his race comments. A journalist might argue that the story is newsworthy because Watson is a public figure who has made public comments, and if his ancestry seems to contradict his public comments, even in a tangential way, that is a story.

But the entire reason why many people think public genomics is a bad idea revolves around privacy and informed consent. People want to believe that their genes won’t be used against them – that information about risk alleles won’t be used to deny employment or insurance, for example. Information about one’s ancestry clearly falls in that category: most people want to keep such information private.

Informed consent is a problem in public genomics because your genes are not only yours – they are also the genes of your parents, children, and other relatives. When you make your gene sequence public, you are taking with it information about your kin, who may not want such information out there. At present, they have no way of stopping you – they have to live with your decisions. Which has created ticklish situations: a number of anonymous sperm donors have been tracked down by their children, using the donors’ relatives’ DNA sequences available from genealogy testing services.

If you want to advance the field, then you want to find ways to build confidence that genomic data won’t lead to sensationalistic or salacious attention to people’s genealogical information.

I mean, what is the purpose really of spreading a news story that Watson may be 1/16 African, without adding the context of how common this degree of genetic mixture has been in American history in particular, and between populations generally? Why would a geneticist working with humans not realize the ethical problem? It has exactly the same salacious quality as a story about a political candidate’s ancestry – remember the story about former senator George Allen’s Jewish mother? I can’t believe that a credible researcher would want to bring this to genomics.

Maybe this is a play to discredit public genomics and advance the idea of some kind of data security system. From Stefansson’s quotes, it seems possible he is trying to make his company look good and other ideas, like George Church’s sequencing project, look bad.

But somehow I doubt it was that closely thought out. Probably their zeal to “get” Watson carried them away. If so, their approach serves to discredit their field by raising serious concerns about privacy and misinformation about race.