Personalizing Medicine through Genomics An Update
In early September I visited the Center for Genetic Research Ethics and Law (CGREAL) at Case Western. My colleagues there presented some of their work on what they are calling “early adopters” of consumer genomics (specifically genome profiling). Their research begins to profile who the users of these services are: for one thing this is a population of users who are not deceived or duped by what they are getting, although some are still disappointed by what they do get.
While it’s true then that expert discussions about patients/users of genetic and genomic tests often portray the latter as uninformed and in danger of being duped, CGREAL’s research of at least these early adopters shows otherwise. Further (and not surprising to me), the early adopters were very tech-oriented (many worked in IT); most were male, with disposable income—and not overly concerned, if concerned at all, about more socially oriented issues, such as discrimination, insurance reimbursement, public health, or health equity. Their ethics were couched in hyperindividualistic concerns—how they might have to change their lifestyle or diet, for instance, to be healthy, or find a way to protect their own privacy. But is this how we really want the future of health, health care, and our society to look, and really how feasible is it?
We need to be more creative and inclusive in thinking about personalized genomic medicine (PGM). I’m not saying there isn’t a place for consumer genomics, but its underlying logic and its language are suffusing PGM discussions.
Even a recent critique of direct-to-consumer genetic tests in the New York Times followed this logic (see “Buyer Beware of Home Genetic Tests”). The author’s (Jane Brody) main point comes down to this: genetic tests are more hype than hope, and with genetic tests rapidly becoming more widespread through the increasing direct-to-consumer commercialization of them, the buyer had better beware, and the buyer/patient is really better off getting their tests from doctors and their interpretation from genetic counselors.
Brody’s article didn’t set off a cascade of responses from those who live in the print media world, but it certainly did for blogosphere folks, who complained that her argument smacked of paternalism. Responses came from the Genomics Law Report, the Genetic Genealogist, Genetic Future, Posterous, and the Gene Sherpa.
Many of these bloggers made some good criticisms of the article. I don’t have room to go into them here. Rather, I’m drawing attention more to the underlying framing of both Brody’s column and other recent New York Times coverage of PGM as well as much of the genomic medicine blogosphere’s discussions.
Social concerns are often not well-represented, especially in the blogs above, but there’s something more fundamental here that we should all be concerned with: that is, the dominant frame for discussing personalizing medicine with genomics is funneled primarily through a consumerist approach to health care, medicine, and health itself in which the individual—patient/user/client (it’s increasingly difficult to separate these anymore)—must take all responsibility for educating herself about genomic information, her status as a healthy person, and even her status as a citizen. In their narrative we are compelled to take the consumer model as the only viable model for personalizing medicine, or else we are left to be treated paternalistically by the medical establishment and government.
The point I’m making is that there is a growing general directionality limiting public discussions about PGM today. But there’s a whole spectrum from which we can create other models of health care, medicine, and wellness, and if the early adopters, advocates, and evangelists of PGM are not willing to make room for them, those concerned with health care for all and not simply the privileged few should certainly step up to the plate.