Personal Genomics: the Ethics of Shared Uncertainty

I’m a Visiting Professor this term at the wonderful Keck Graduate Institute of Applied Life Sciences (KGI). Yesterday afternoon I gave a talk there, called “Direct-to-Consumer Genetic Testing: Consumer Empowerment or High-Tech Fortune-Telling?”

I didn’t talk about genetic testing in general, but rather specifically about at-home genetic tests (a.k.a. “personal genomics” services) sold by companies like 23andMe, Navigenics, and deCode.

The scientific consensus (among academic and clinical geneticists, anyway) seems to be that such tests aren’t worth much. You see, these services involve doing genetic tests based on a statistical method known as “genome wide association studies” (GWAS). Basically, rather than identifying a gene responsible for a particular illness, such studies look for statistical correlations between certain genetic “markers”‘ and illnesses. Sometimes those correlations are “suggestive” but statistically weak: it’s very often not clear that testing “positive” for a genetic marker associated, statistically, with some disease, actually tells an individual much about personal risk, or what to do about it.

So, is it ethical (or under what conditions is it ethical) to sell a product the utility of which is very much in doubt?

In my talk yesterday, I examined a range of possible comparison classes & categories of products currently on the market to which we might compare personal genomics services. Are they like pharmaceuticals: potent, potentially dangerous, and in need of serious regulation? Are they more like medical scans (x-rays, MRIs) and tests like home-pregnancy tests? Are they more like self-help books, which are never guaranteed to help, but which are (probably) harmless and might just help some people? Or are they like the “services” provided by fortune-tellers: utterly uninformative, but hey maybe fun? I don’t think the answer is easy.

I suggested in the talk that one of the keys to this, from a business ethics point of view, is framing it in terms of the information available to the buyer and the seller. Though they’re optimistic about what customers will gain from their products, these companies are mostly pretty modest about that, and acknowledge that they just don’t know how useful their products will be to individuals. Maybe individuals who get tested will be more health-aware as a result. Maybe they’ll reevaluate lifestyle choices in positive ways. The companies are — and ought to admit to being — a bit uncertain about this. But if they’re uncertain, and if they’re open about that, then there’s no clear sense in which consumers particularly need to be protected. Information asymmetry is dangerous: when the seller knows a lot more about the product than the buyer does, the buyer can find themselves duped. And certainly there will typically be huge information asymmetries with regard to the science behind personal genomics. But it seems to me that there isn’t much asymmetry regarding knowledge about how useful the product is. And it seems to me that it’s not unethical to market a product in the fact of shared (honest) uncertainty.

(Here are 2 previous blog entries on the topic: Genomics & Personalized Medicine and Genetic Testing: Ethical to Market a Not-Very-Useful Product?.)

1 comment so far

  1. […] Personal Genomics: the Ethics of Shared Uncertainty […]

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