Two opinions on D.T.C. personal genomic testing

By Razib Khan | April 17, 2011 11:38 am

It’s Mischa Angrist and some medical geneticist M.D. offering their opinions in The Los Angeles Times. You know what Mischa is going to say, so what’s the good doc’s opinion? It’s the first and last paragraph which are really interesting to me:

The kind of regulation I would like to see on direct-to-consumer genetic tests would require the involvement of medical professionals who understand the testing information, its limitations and its applications, and who can interpret the information in a way that makes sense to each person.

At this point in time, we as a society are also sharing the burden of paying for healthcare. So when someone goes through direct-to-consumer testing and subsequently seeks expensive follow-up testing, it has an impact on the resources of society as a whole. Personal genomic testing is, therefore, not just a matter of personal freedom; its use intersects with the needs of the community.

As revealed on previous threads there are hardly any medical professionals who “understand the testing information, its limitations and its applications, and who can interpret the information in a way that makes sense to each person.” Those who might dispute this characterization can be very patronizing and contemptuous when their turf is impinged upon. Fair enough. I don’t back down from this characterization. Of the half a million physicians and surgeons in the United States very few are qualified to interpret genomics results to genuinely introduce a “value add” to their patients.

Seeing as how our medical system in the United States is scaffolded with all sorts of regulations, and by some estimates more than 50% of the money now has some government origin (Medicare, Medicaid, etc.), I accept that the reality is that talking about this in an individualistic context runs up against the structural facts that whether you like it or not many of the steps are already de facto socialized. Therefore, some democratic debate is going to occur, because the money comes out of the public kitty.

If the debate ends up on a position where these medically relevant tests must be conditional upon a professional being able to interpret them, we are simply not going to have much personal genomics at all. Right now I don’t think that dense marker genotyping is “prime time” in any case, but in a few years we’ll have full sequences as well as (hopefully) a lot more research utilizing the new data sets. If a gatekeeper is necessary to protect the public from itself there’s going to be a lot of latency because of the time which medical education and retraining will take. Additionally, I really don’t think it would be worth it for a physician or genetic counselor to devote 15 minutes to a set of results. If you are paying for these services (or the government is) you better have a very thorough job done so that there’s no error or oversight. On the other hand, if you just want a low bar of idiot-proofing, you can simply mandate informational display which is bold and clear enough that even the idiots could comprehend the details (I’m thinking use of different colors and facing).

Unlike Mischa and some of the other anti-paternalists I’m frankly not that admiring of the intelligence of the American public, or the broader world public. Most humans are good, ethical, people, but they are not good at probabilities, and there’s a lot of “irrationality” baked into the cake of their behavior. Rather, my position is that in the broader context of the need for innovation and economic growth there are only so many things we can “protect” the public from. We could, for example, enforce a healthy lifestyle on the American public by massive regulation or bans on various processed foods. We could also ban diet books, quacks, etc. There’s a lot of low hanging fruit out there, but ultimately we focus on domains where there is a clear and present danger. I assume that the anti-D.T.C. crowd think they’re “getting ahead” of an impending disaster of excessively personalized medicine. I think don’t think that that disaster is in the offing. We already have a lot of personalized medicine. Go to any bookstore and you’ll see a whole lot of advice on what you should eat, how much you exercise, etc. Then you can walk across the street and go to the supplement store. The key is not to banish personalized medicine, it is to make it better. I think D.T.C. personal genomics has that medium term promise. That promise will be realized more quickly if experimentation, innovation, and decentralized trial & error are allowed to do their work.

CATEGORIZED UNDER: Genomics, Personal Genomics

Comments (9)

  1. The argument that this could lead to new wasteful and destructive medical interventions is a good one. There are many examples of quack direct-to-consumer diagnostics. There is also some hocus pocus about the power of “preventative medicine,” such that a moron like possible future-president Mike Huckabee made the phrase the entirety of his 2008 health care plan. It is not popular to suggest bringing back power to the HMO’s to manage health care spending to lower its inflation rate, which is exactly what they accomplished. The only system politically realistic in today’s more leftist society is something like the Oregonian rationing sytsem (that didn’t ration but did go bankrupt). On the other hand, if we structured our health care system around the core philosophy of mandates, personal responsibility, and limited government funding, we might influence individual behavior in surprisingly helpful ways. Limited resources would bring more gravity to health care decisions. Unfortunately, this system would be too much like Romneycare for Republican approval and too much like Singapore’s system for socialist New York Times opinion-makers to take notice. I think the best argument against my logic is that personal genomics might not be the straw that breaks the camel’s back. Almost all medical innovation moves the American system closer to bankruptcy, one could argue, so let’s just dedicate more of our GDP to medicine at the expense of killing terrorists and supporting grandparents. I actually think that killing terrorists is a better investment.

  2. I say go further. Ban all medical-related information from the internet (nobody knows what patients might be dangerously misunderstanding about their diseases) and refashion MDs as Rightful Medical Elders (or Gurus). Books for the specialists only please. An idea would be rewriting them all in some hard to learn obscure language for better protection of the innocent.
    Enough of this knowledge nonsense – everybody knows already knowledge is only there to be abused in ways harmful to poor defenseless intellect-deprived people, threatening the stability of society as a whole.

  3. Wikipedia quickly tells you what industries spend the most on lobbying (manipulating congress). My industry, petroleum, with coal, and nuclear ranks a weak 5th, behind the two biggies, finance and medical. Military is a mere 10th.

  4. First, a quick nomination of #2 as comment of the week,.

    Second, on Korf’s closing paragraph. Follow up testing has as impact on the resources of society as a whole? Would Korf prefer that I blow my money on beer, a nice car, a new TV? Or does he think I am diverting my donation to Oxfam?

  5. DK

    someone goes through direct-to-consumer testing and subsequently seeks expensive follow-up testing, it has an impact on the resources of society as a whole.

    That’s the lamest excuse in, like, ever. By that logic we should hide 100% of all information from non-credentialed persons. If that the best the opponents of genetic testing can offer?

  6. If this were a democracy, I’d also vote comment two as comment of the week.

  7. “Of the half a million physicians and surgeons in the United States very few are qualified to interpret genomics results to genuinely introduce a “value add” to their patients.”

    Certainly not to you or to Diogenes, but as it stands that statement’s wrong. It’s less evident right now, because so many of those spitting into 23andme’s plastic containers are motivated and may even have relevant educational backgrounds, but the majority of the US population almost certainly would get value from their physicians interpreting their genomics results.

    Which is not to say that enforcing that they be gatekeepers to this knowledge is particularly reasonable or respectful of the individual. We can in general still tell more about an individual’s risks from a good family tree than from genomic analysis, and no-one’s proposing that professionals need act as gatekeepers there, and with good reason.


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About Razib Khan

I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. In relation to nationality I'm a American Northwesterner, in politics I'm a reactionary, and as for religion I have none (I'm an atheist). If you want to know more, see the links at


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