Should we fully share our genetic data?

I subscribed to a genetics mailing list and through it, I was asked on several occasions by other participants to send my raw genetic data for this or that chromosome (that is, the sequence of letters that resulted from my genetic testing).

A lot of people are interested in this kind of information, since certain comparisons between individuals can only be carried out using ad hoc software. There are many amateur geneticists out there – and some of them have developed little computer programs, more or less easy to use, to extract information from the raw DNA data – and which are of particular interest for the search of common ancestors when the people involved didn’t have their genes read by the same company.

I must confess that I have ignored these invitations/requests. I confess that the idea that my genome, even a mere part of it (or to be precise, of the 500 thousand letters of my DNA that were read by 23andme when I got tested) could be circulating in cyberspace, without my knowing exactly where, gives me the creeps.

A few days ago, however, I attached all of my raw data (to which I have access) to an email in order to participate in a scientific project that I find very interesting. But when, just for an moment, I thought I had sent it to the wrong email address (in fact, to the public mailing list I just mentioned), I became really nervous. Luckily, it was only a false alarm…

A few months ago, in an article in the New York Times, well-known scientist Steven Pinker asked himself what could be the consequences of publishing one’s genome (and in his case, his whole genome, since he is participating in a full-sequencing project).

His answer boiled down to this: if an insurance company ou any other entity wanted to to read secrets from our genes to infer our individual characteristics, the effort would be doomed from the start. Genes offer essentially statistical information, which apply to groups of people. And, apart from a few exceptions, their contribution to every disease and physical or psychological trait is almost inextricable.

“Many of the dystopian fears raised by personal genomics”, Pinker wrote, “are simply out of touch with the complex and probabilistic nature of genes. Forget about the hyperparents who want to implant math genes in their unborn children, the “Gattaca” corporations that scan people’s DNA to assign them to castes, the employers or suitors who hack into your genome to find out what kind of worker or spouse you’d make. Let them try; they’d be wasting their time.”

This is true in most cases. But what about those serious genetic diseases that depend on only one gene – and owing to which and insurance company, for example, could rapidly determine our individual propensity and deny us an insurance policy – or a potential employer refuse to give us a job? Even in that tiny bit of DNA contained in our mitochondria, which is used to determine our matrilineal ancestry, there are some disease genes – some of which haven’t yet been identified.

When I had my DNA tested and wrote about it, I knew I could be unveiling things that could one day “be used against me” in a worst-case scenario. After all, the exploitation of genetic data by third parties is virtually devoid of regulation. But I decided to take that risk because my curiosity was greater than my fear of the hypothetical risks involved – and because I thought it was important to write on the subject.

As to the scientific project I said I’m involved in – which is being done by scientists at Harvard I know that they will use it, together with that of many other people, to search for clues to the ancestrality of a community of people as a whole (I’ll say more about it one of these days). But they will not reveal any of my individual traits or results to anyone other than myself. To ensure this was clear on both sides, I had to sign several consent forms where they, on their side, specify extensively what they are and aren’t allowed to do with my genetic data.

But sending out my genetic “letter soup” in more informal terms is altogether a different matter: we know information can spread like a virus in the Internet and end up in the wrong hands. I’m utterly sure that the people who are asking me to send them parts of my raw data are well-intentioned – there’s absolutely no question in my mind about it. But I feel that accepting to do it means that I will cease to have control over that data. And for the time being, in spite of the remoteness of the risks this entails (in this I agree with Pinker), is a step I’m not ready for just yet.

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