title: Models of biobanks and implications for reproductive health innovation.
abstract: Biobanks are designed with particular purposes in mind. These purposes are reflected in the governance frameworks that define the conditions for participation and access by researchers. In this paper, I analyse two different models: the commercially aligned deCODE biobank and the 'public good' framework of UK Biobank. These diametric models have both featured 'the public interest' as pivotal to their achievements. However, if properly understood, the public interest rhetoric of deCODE actually conflicts with any professed community interest. The reasons why are explained, and the effects this has on conditions for participation are critiqued, before reflecting on how each model might have an impact on reproductive health research.
authors.affiliation: Department of Bioethics, Faculty of Medicine, Dalhousie University, 5849 University Avenue, Room C-312, CRC Bldg, PO Box 15000, Halifax, NS, B3H 4R2, Canada. benjamin.capps@dal.ca.
authors.forename: Benjamin
authors.initials: B
authors.lastname: Capps
mesh_terms: D018070:Biological Specimen Banks / Q000941:ethics*; D004059:Diffusion of Innovation; D032984:Ethics, Research; D036281:Genetic Research / Q000941:ethics; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D062069:Inventions / Q000941:ethics*; D011634:Public Health; D060728:Reproductive Health / Q000941:ethics*; D027724:Reproductive Techniques, Assisted / Q000941:ethics*
keywords: Biobank; Consent; Reproductive health; The public good; The public interest