The Unusually High Standards of Genomics
Why do Navigenics, 23andMe, and other genomic companies incur so much scrutiny from the medical community when all sorts of flagrant quackery, mysticism, and crass marketeering seems to get a free pass to easy profit? Some genomic tests may not be as medically actionable as implied, yet we all endure billboards screaming crap like “scientifically proven: 30% more kick!”, and I don’t know of a serious organized effort in the medical community to regulate these industries out of existence. Pulp books about faith healing and horoscopes are sold at every grocery store checkout isle, yet a consumer website selling tests backed by well-cited genomic science (even if medically doubtful) is the worst public misinformation meriting the highest regulatory priority?
Maybe the unusually high standards for genomics is because genomics can be held to high standards —it’s unusually scientific and unusually transparent compared to almost everything else the public labels as “health.” Fortunately, strong accountability to accurately and precisely describe reality is good science. Expect great, real results from genomics in the future. However, the focused scrutiny must be frustrating for well-meaning genomic companies their teams. Why must they endure the focused ire of ethicists, scientists, doctors, and the government when such other flagrant dishonesty is systemically dismissed?
With few exceptions, the difference between “drugs and medicine” and “consumer products” seems to be about the same as the difference between “primitive magic” and “cultural diversity”: about one hundred years and a grandfathered license… assuming nobody seemed to die too quickly from its indulgence. An idea’s unremarkable past awards it some inscrutable permission to exist as it is, and that inscrutable permission is too easy to forget when a new idea like genomics seems so dubious by comparison.
I always endorse the strictest scientific rigor, but we need some perspective. Genomic companies aren’t perfect, but both the petty condemnation and enthusiasm isn’t useful. For example, me mocking Navigenics for their apparent lack of customer endorsements might be funny for me, but that’s not a useful, rational contribution to our better understanding and application of medical genomics.
What is useful to ask is if a company claims to be the agent of a “healthcare revolution” by providing “information about what actions to take to help them stay healthy,” then what physician endorses what action by what information, why, and how will that help people stay healthy?
Is this too much to ask? Yes. In fact, I don’t think that there is just a problem regarding verifiable and actionable information about health, I don’t think that it hardly exists in the world of the average American consumer. I think that you could visit every supermarket in your city, watch 1000 hours of television news, and purchase every consumer product advertised as having anything to do with your health that’s not explicitly a drug —and not find one single scientifically verifiable and actionable claim about your health.
What is useful to ask is if a company’s top investor states in a press release that it “ensures state-of-the-art medical advice and services” and the company very clearly advertising it’s product, “Health Compass,” as a medical advice service, then why is every webpage of the service branded with the statement “Navigenics does not provide medical advice, diagnosis or treatment.”?
Is this too much to ask? Yes. In fact, I don’t think that there is just a problem regarding rational, consistent, honest, and transparent legal regulation of medical advice, I don’t think that it hardly exists in any American industry. I think that the failure of rational regulation of “insurance that is not called insurance” and “loans that are not called loans” cost Americans $700MMM+$200MMM ~= $1 Trillion in 2008. I challenge anybody to produce estimates of any other social liability that compares to social liability incurred by that great American tradition of selling “[blank] that is not [blank].”
Yes, it is too much to ask, but I ask anyways. “How is this actionable?” “How is this legal?” This is my industry, my field, my passion I demand it, I expect better, and while I can’t fix the world, I can sure make every effort to make my little corner of it clinically sterile. I don’t care how aristocratic, rich, powerful, well-connected, and prodigiously educated you are, I can be understanding, I can be forgiving, I can be reasonable and professional, but I want a honest conversation and some real answers, not more feel-good marketing tripe.
Think Gene at Technorati
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Navigenics’ Medical Advice | Think Gene
[...] mentioned in The Unusually High Standards of Genomics, here is a screenshot of Navigenics’ “[medical advice] that is not [medical [...]