I complained mightily about the problems I had getting George Church’s essay (“The Genome Generation”). Church is the major organizer of the Personal Genome Project, and advocates the idea that individuals should release their genetic information to the public.
In his essay, Church begins by pointing to the coming benefits of genetic research, refers to the need to support the “altruists” who provide their information openly for research, and ends by making a generic call for genome sharing:
As "the first genomic generation" we will set the rules that many future generations may follow. Will we treat our genomes like our faces, which we share publicly even though they reveal details about our health, ancestry, and personality? Or will we be forced to hide them from view?
Talk about a leading question! Will you remain hidden behind your genetic burka?
I’ll ask a different leading question: Is it generally a good idea to release your personal information to the internet?
Naturally, it depends on the information. And how other people will use it. We know that credit card numbers can be used by bad people for nefarious purposes. Book purchases can be used by Amazon to market more books to you. And your recently played iTunes list can be used by major movie studios to determine whether you would be a good unpaid crowd marketer.
Church’s argument relies on two assumptions:
Someone with your genetic information can’t hurt you.
You will benefit along with the rest of humanity from open genome sharing.
Of course, assumption 2 is subject to the classic free rider problem – why share when the collective benefits will come to you anyway? So that brings us back to assumption 1.
Presently, there are few practical ways to hurt a person using her genome. Of course, that depends on the meaning of “hurt”. Some people would be extremely embarrassed to reveal aspects of their ancestry, which is easily exposed with genome information. In fact, the second public genome (Watson’s) was almost immediately subjected to ancestry testing. These testing results were publicized in an apparent attempt to discredit Watson’s public statements on race.
In the United States, it sadly quite common to investigate the ancestry of political candidates, and to use ancestry to discredit candidates’ public statements. Without question, the world would be a better place if total openness would make people value diversity, as Church hopes. But I doubt that unilateral genomic openness will inspire such a sunny outcome.