Reihan Salam with an interesting post chronicling Razib Khan’s pledge to go public with his full genome (Reihan also pledges), to help address the collective action problem of not having many genomes public. Says Khan:
I expect to get my full genome sequenced in a few years, at the latest. When that happens, I’ll try and place it online at a public repository. Why? There’s something of a chicken and egg issue with the utility of genomes. The more you have out there, the more juice you can squeeze.
Reihan notes that many worry about making public their genome if they live in a nation with private health insurance, out of fear that such information will be used against them. To make this point, he uses a piece by Steven Cecchetti which asserts that scientific progress generally makes the movement toward a government run single payer insurance system inevitable, due to the presumably unlimited means with which to underwrite/identify health risk. Reihan disagrees, I think convincingly:
Though Cecchetti makes a strong case, I disagree that a single-payer health system is the inevitable outcome. Rather, the genomic revolution will require a rethinking of the health safety net. It really is inevitable that the taxpayer will foot the bill for many individuals with chronic ailments, etc. Yet a more market-oriented health system might also lead to more efficient providers, including more efficient providers of services to the most expensive patients, who account for an extraordinarily high share of system-wide costs….
A few points. First, the Genetic Information Non discrimination Act of 2008 (GINA) bans the use of genetic information for many purposes including employment and major medical health insurance (but not LTC insurance). I think the worry about genetic information destabilizing private insurance markets is most worrisome for relatively rare types of insurance, like LTC insurance, where it could theoretically be used under GINA. And it is not entirely clear that those at high risk are the ones always hurt by differential information in an insurance context.
Adverse selection is typically viewed as hurting the insurer only, but it can also harm lower risk consumers. The chance of this happening seems heightened with a very small market such as private LTCI. If the policy goal is to expand private coverage and to assign a fair premium, the use of genetic information could aid in achieving this goal if both “sides” know and understand the information. Of course, the larger the risk pool, the less important underwriting becomes.
A final point about making one’s genome public…my Duke colleague Misha Angrist has a great book Here is a Human Being: At the Dawn of Personal Genomics. It is a very interesting read and talks in detail of his decision to make his genome public. Most interesting is the discussion about how his choice would affect his daughter, who didn’t choose to go public (but lots is known about her genome).
Many opportunities, with many risks. I think Reihan big picture has it correct that genomics will require us to rethink many things; we need to react, but not over-react. That said, I don’t feel ready to make the pledge. I am not sure why.
update: small tweak and here is Misha’s blog genomeboy.