«If you give them your little finger, they’ll tear off your entire arm»: losing trust in biobank research

AbstractWhy do some people withdraw from biobank studies? To our knowledge, very few studies have been done on the reflections of biobank ex-participants. In this article, we report from such a study. 16  years ago, we did focus group interviews with biobank participants and ex-participants. We found that the two groups interestingly shared worries concerning the risks involved in possible novel uses of their biobank material, even though they drew opposite conclusions from their worries. Revisitin g these interviews today reveals a remarkable relevance to present concerns, since thepossible developments that worried ex-participants and participants 16  years ago now are becomingrealities. Drawing on conceptual distinctions by sociologist and philosopher Niklas Luhmann, we argue that while ex-participants express a loss oftrust in the biobank institution to manage the use of their biobank material in a legitimate way, remaining participants expressedconfidence in the management of the biobank institution to secure their interests. This analysis brings out important aspects of emerging trends in biobank research participation.
Source: Medicine, Health Care and Philosophy - Category: Medical Ethics Source Type: research