Tuesday, March 18, 2008

Who Do You Trust ... With Your Genetic Information?

A recent post by Jane Sarasohn-Kahn of Health Populi summarizes the findings of the 2008 Edelman Trust Barometer. For those of us interested in the progress of predictive health research, who "we" trust is a key question. If participants and the community at large, including the legislators representing the community, do not trust the researchers who form biobanks and enroll participants in longitudinal studies, support will decline: the money will begin to dry up, adverse legislations will be passed, and (most importantly) potential research participants will do something else with their time and good will. Researchers will be relieved, therefore, to discover that the "Biotech/Life sciences" industry is one of the most trusted sectors in North America - a few points ahead of "Banks" and a few points behind "Technology".

One must remember, however, that the survey is limited to what the PR firm calls "opinion elites" - people Edelman's considers to be influential or, even, trend-setters. I suspect that most medical researchers hope for a more diverse demographic. Of course, even if the survey had measured the attitudes of a broader population, the findings would not be all good news for the future of predictive health research studies. The "Insurance" industry ranked only above "Media companies" on the trust-barometer in North America, and was ranked last in the global survey. Will people, even "opinion elites", be willing to participate in research if they anticipate that the results may be used unscrupulously (or to their personal disadvantage) by a distrusted insurance industry? Would you? - J.O.


Jane Sarasohn-Kahn said...

Thanks for the hat tip to Health Populi. In the context of your discussion, it's important to note that ten 'uber-elites' are making their genetic information public, including Esther Dyson who has been active in our Health 2.0 conferences. The so-called first ten genome enthusiasts are the earliest adopters on this s-curve. Perhaps this is simply a wave of celebrity genomics, but as with all new-new technologies, it takes a small village to get the adoption curve moving.

PredictER said...

Jane, Thanks for the comment (I'm a regular reader of Health Populi). I see your point about the early adoption of genomic medicine. Let's hope that the curve does not exasperate existing health inequities.