chapter  8
23 Pages

Tokens of Trust or Token Trust? Public Consultation and ‘Generation Scotland’


Large-scale genetic databases are being developed across many different countries as health-related genetics research moves to include population-level studies. Research involving large populations (with people not necessarily affected by genetic conditions and the world of the clinic) evokes a range of concerns for the different groups involved. Recognition of this has led to considerable debate about the ethical, legal and social issues in policy and research communities as well as within the wider public sphere. Such concerns fi nd expression in a variety of ways: a renewed worry about the spectre of eugenics; recognition of the risks of unanticipated consequences; and anxiety about data security, privacy and potential breaches of trust. Such concerns are, of course, not unique to the collection and use of DNA for population-level research. However, particular issues come together in this context, making questions of trust of interest for those managing the research process, as well as for those more widely concerned with science/society relations. Research participants are asked to donate DNA for future research, with no direct benefi t to themselves and no short-term health gain for the population more generally. Trust, a slippery and relational concept, is invoked in this transaction, and it is seen as necessary for the effective and acceptable development of DNA databases. However, trust’s specifi c dimensions, in relation to genetic databases for health research, require empirical investigation, for they may not be as they seem, nor as necessary for participation and donation as assumed.