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A reader has pointed me to the latest issue of the American Journal of Bioethics, which is devoted to social networking and personal genomics. I'm still working my way through the many interesting articles, but for now I wanted to cover some useful points in the editorial (entitled "A Pragmatic Consideration of Ethical Issues Relating to Personal Genomics"), which was written by a series of big names from personal genomics company 23andMe, including both co-founders.
The article is designed to address some of the more popular misconceptions surrounding personal genomics; here's a quick run-down of the major points:
Not all variants reported by personal genomics companies are only weakly predictive. It's certainly true that the common variants that form the bulk of the markers tested by personal genomics companies tend to be very weakly associated with disease risk, but the authors note that 23andMe and other providers are now reporting on less common genetic variants with much larger effects on disease risk (I've previously discussed 23andMe's move into breast cancer gene testing).
Genetic information is both exceptional and non-exceptional relative to other types of risk factors. Basically, genetic risk factors are unusual in that they are fixed (unlike, say, smoking status), but otherwise they can be treated just like any other risk factor (e.g. cholesterol levels) in evaluating disease risk.
We cannot predict in advance whether a genetic variant has clinical relevance. This is an interesting one. We often see a clear distinction made between "serious" genetic testing (mainly for disease risk) and "frivolous" or "recreational" testing (for ancestry or predictors of non-disease traits such as eye colour or earwax consistency). The authors note that this division is rather flimsy, and indeed that markers associated with eye colour and ancestry have been reported to be associated with health-relevant traits. They conclude:
I largely agree; I think we have to acknowledge that any genetic information we permit consumers to have access to may one day turn out to have clinical relevance. As such, creating separate policies for different types of genetic information may prove extremely difficult.
Even information that is not clinically actionable can still be valuable. Another extremely important point: the argument is often implicitly made (typically by clinicians) that genetic testing for conditions for which there is no treatment is somehow not useful, but this information can be extremely valuable for making life decisions: the authors mention "purchase of long-term care insurance, informing family members, supporting [disease] research studies, or other coping efforts".
Data sharing policies should be flexible. The authors cite Facebook's "granular customizability of data sharing" as a model for personal genomics, and argue that this customisability in and of itself can have benefits: "The option--and necessity--of customizing privacy settings can actively engage users to learn about the unintended consequences of sharing."
The notion of online sharing of genomic information is viewed with shock and often horror by many traditional medical professionals accustomed to a rigid model of data protection, but sharing of information with a trusted peer network can have benefits in terms of both emotional support and rapid clarification of misunderstandings. (It's worth noting here that the level of genetic literacy of many personal genomics customers is substantially higher than that of the average medical practitioner, so such networks can draw on a fairly hefty knowledge base.)
I'll hopefully have more to say as I trawl through the remaining articles, many of which look fascinating, but for now I'll finish with the closing quote of an article entitled "We Are the Genes We've Been Waiting For: Rational Responses to the Gathering Storm of Personal Genomics" from the one and only Misha Angrist:
