CSSD working group Precision Medicine: Ethics, Politics and Culture presents "Ask but Don’t Tell: The Stubborn Alienation of Research Participants in the Twenty-first Century," a talk by Dr. Misha Angrist (Duke University).
"I would like to think that if somebody does a test on me or my genes, that that's mine..." President Obama's empathetic words to a White House gathering celebrating the launch of the Precision Medicine Initiative were spoken in early 2016, but somehow they already feel like something from a distant fever dream. Meanwhile there's a lot going on - the steady march of Big Data; ascendant science denialism; a reproducibility crisis marked by sometimes-bitter recriminations; mistrust of big pharma; and, not least, the ambitious recruitment of large cohorts of research participants. The latter has been accompanied by much rhetoric about "engagement" and "empowerment." But with apologies to Gertrude Stein, how much there is there? Might this hot mess of a moment present an opportunity to truly challenge longstanding asymmetry of power between researcher and participant?