title: Tackling community concerns about commercialisation and genetic research: a modest interdisciplinary proposal.
abstract: In recent years, there has been a rise in the creation of DNA databases promising a range of health benefits to individuals and populations. This development has been accompanied by an interest in, and concern for the ethical, legal and social aspects of such collections. In terms of policy solutions, much of the focus of these debates has been on issues of consent, confidentiality and research governance. However, there are broader concerns, such as those associated with commercialisation, which cannot be adequately addressed by these foci. In this article, we focus on the health-wealth benefits that DNA databases promise by considering the views of 10 focus groups on Generation Scotland, Scotland's first national genetic database. As in previous studies, our qualitative research on public/s and stakeholders' views of DNA databases show the prospect of utilising donated samples and information derived for wealth-related ends (i.e. for private profit), irrespective of whether there is an associated health-related benefit, arouses considerable reaction. While health-wealth benefits are not mutually exclusive ideals, the tendency has been to cast 'public' benefits as exclusively health-related, while 'private' commercial benefits for funders and/or researchers are held out as a necessary pay-off. We argue for a less polarised approach that reconsiders what is meant by 'public benefits' and questions the exclusivity of commercial interests. We believe accommodation can be achieved via the mobilisation of a grass roots solution known as 'benefit-sharing' or a 'profit pay-off'. We propose a sociologically informed model that has a pragmatic, legal framework, which responds seriously to public concerns.
authors.affiliation: ESRC INNOGEN Centre, University of Edinburgh, Edinburgh, UK. gill.haddow@ed.ac.uk
authors.forename: Gillian
authors.initials: G
authors.lastname: Haddow
authors.forename: Graeme
authors.initials: G
authors.lastname: Laurie
authors.forename: Sarah
authors.initials: S
authors.lastname: Cunningham-Burley
authors.forename: Kathryn G
authors.initials: KG
authors.lastname: Hunter
mesh_terms: D003132:Commerce; D030541:Databases, Genetic; D004345:Drug Industry; D017144:Focus Groups; D036281:Genetic Research; D006801:Humans; D012017:Referral and Consultation; D012606:Scotland