There’s an interesting piece that’s been floating around some of the newspapers (Telegraph coverage here; The Australian here) over the last few days about the “DNA Dozen” – 11 scientists and one lawyer who’re having their genome published online in order to demystify the process and tame some of the public’s perception.
Fair dos to them. My hunch is that genetic privacy arguments are often bunk, and anything that helps storm the citadel is fine by me. What we think of as our genomes aren’t really our genomes at all, so much as a genome that’s overwhelmingly the same for everyone save for a couple of quirks here and there. The notion of ownership of the genome, and of privacy, is much slipperier once you begin to get your head around that. If we’re to make sense of genetic privacy at all, we need to do so with a different set of tools from those that we apply to other kinds of information – using conventional notions about the control of information generates some deeply counterintuitive results.
Anyway: I’m taken by a comment from Helen Wallace of GeneWatch UK:
Your DNA contains very personal information about you, and in the longer term we can’t be certain this won’t be used by insurance companies. I don’t think scientists should be encouraging this.
It’s not clear whether she’s saying that scientists shouldn’t be promoting the use of genetic information by insurance companies – which is OK, because that’s not what they’re doing – or shouldn’t be making their genomes public – which is unexplained: the objection would here seem to be that people shouldn’t make genetic information public because that’d mean it was public. GASP!
But the insurance claim is interesting in its own right.
Putting my own (increasingly loony-lefty) politics to one side for the moment, I don’t see the problem with insurance companies getting hold of information. They didn’t enter the market for the benefit of the customers; they did so to make a profit – and there’s nothing self-evidently wrong about that. They seek profit by offering a price for insurance on an open market. For people to be able to withhold their genetic information (which is much less useful than Ms Wallace thinks anyway) implies that they could buy insurance without having to tell the seller some important piece of information – and that looks like cheating.
On the other hand, worries about insurance disenfranchisement seem to me to be overblown. If there’s a free market in insurance, that requires maximal information. But it also suggests that there’ll be competition, and so companies won’t be able to penalise people with a certain gene unjustly for fear of being priced out of the market. Premia ought therefore to fall to a level representative of real risk, rather than prejudice. If some people pay a higher premium because of their genetic inheritance, then that’s not necessarily unjust: they often pay a higher premium for many insurance products because they represent a bigger risk. At the same time, a market will grow up to serve that particular section of the community, just as there’re car insurance firms that specialise in different demographic groups.
If you want a free market in goods and services, then I suspect you’ll have to bite the bullet in respect of making genetic information public – but, assuming the market functions correctly, then it doesn’t matter much. The other option is to abandon the free market. I’m all ears on that front: I’ll carry the banner with you. But in that case, publicising the genome doesn’t make any difference either.