Genome pledge

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.


About Don Taylor
Professor of Public Policy at Duke University (with appointments in Business, Nursing, Community and Family Medicine, and the Duke Clinical Research Institute). I am one of the founding faculty of the Margolis Center for Health Policy, and currently serve as Chair of Duke's University Priorities Committee (UPC). My research focuses on improving care for persons who are dying, and I am co-PI of a CMMI award in Community Based Palliative Care. I teach both undergrads and grad students at Duke. On twitter @donaldhtaylorjr

6 Responses to Genome pledge

  1. Mary says:

    I won’t go public either. I think it’s fine for people to want to put theirs out there–nobody is stopping them.

  2. Mary says:

    Arrggh…the enter key entered that comment and I wasn’t done.

    We may be one election away from rolling back any legislation that prevents discrimination on pre-existing conditions.

    But I also don’t think that those with the lowest privacy threshold ought to set the tone for the discussion associated with privacy. That’s like letting teenagers choose the privacy settings for everyone on Facebook….

  3. Don Taylor says:

    Misha just tweeted my post like this RT @donaldhtaylorjr: I am not ready to pledge to make my Genome public //MA: nor should you ever be compelled to

    So not all who have taken this step think everyone should do the same. I think I am honestly not sure I want to know what mine “says” about me.

  4. Mary says:

    Yeah, I also just re-tweeted that 🙂 (but had to trim it a bit–damn 140 limit).

    Maybe you can tell me something if you are more deeply knowledgeable about GINA: I’ve seen it written that if you disclose stuff to your MD that might have come out of your presumably-private genome data, then it becomes part of your medical record and that may not be covered by GINA. Is that the case in your understanding?

    • Don Taylor says:

      I am not entirely sure about medical record. I understand GINA to ban the USE of the information for certain purposes (like employment discrimination, underwriting health insurance). I think there are legal reasons your medical record could be made public, and in a private insurance transaction an insurer could request your medical record (say for LTC insurance) and you could say no, but then so could they, so far as I can tell. It should be said there is no evidence that LTC insurance companies use genetic info in underwriting. I will look through some stuff I have on GINA; there may be a reader who will know more.

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