genomeboy.com

Or, as my Texan father would say, INsurance…

I will get back to George, but this article in The Economist captures some of both the heat and the light surrounding personal genomics and deserves comment. This passage in particular struck me:

The problem arises when one looks to the medium term. If genetic information is kept secret from insurers, but individuals have the freedom to add or drop insurance coverage, then problems of adverse selection may arise. People will be tempted to “game” the system. Those who test negative for a serious and costly disease may drop coverage, while those who test positive may add or increase coverage. Insurers worry this will lead to a collapse of their risk pools, and ultimately to financial ruin.

Well, they should be worried. As my colleague Bob Cook-Deegan notes in the article, folks with Alzheimer’s susceptibility alleles are five times more likely to alter their insurance coverage than those without them.

And some would argue they shouldn’t even wait to get tested: Not long ago, I interviewed my own physician. I asked her if she had any wisdom for me given that I would soon have my genome sequence made public. I expected generic advice about looking for susceptibility alleles and modifying my lifestyle accordingly. Instead she said, “I would load up on disability insurance if I were you. Buy as much as you can afford.” I was gobsmacked because 1) it seemed to me a deeply cynical response to the Genome Revolution from my doctor and 2) it implied that insurance companies might actually pay attention to personal genomics in the near term, which I still find hard to believe (although that, I suppose, is a deeply cynical response from me). But the Economist is right: of course we will game the system. That’s capitalism, baby. And if Jerome Bettis can fake an injury, anything is possible…

To me, the answer seems obvious (which is why I’m not a health care economist): a single-payer system coupled with a deCODE-style pool where, unless you opt out, your genome (and perhaps some fraction of your phenotype) becomes part of a national database that is made available for biomedical research. The benefits of that research would then be returned to citizens at no cost. Of course, as George Church is learning, genetic exceptionalism is not easily overcome. DNA is still the bogeyman and most people don’t want to show you theirs. As another colleague, philosopher Alex Rosenberg, once said to me, it will be tough to get people to trade autonomy for beneficence. But that doesn’t mean we shouldn’t try.

Update: Esther offers her take.