Making it transparent. On naming, framing and administrating biobank research on native people

Abstract

Despite more than 50 years of genetic research on Sámi people in Sweden, there has been very little engagement with the ethical issues related to this research. My aim is to investigate the ethical challenges in biobank research on Sámi people, to identify ethical challenges that have been overlooked and to find ethical solutions. In my historical research inquiry of published material and interviews with people that have participated in this research, my research questions have been: How are blood samples from Sámi people collected, codified, governed and analyzed? What ethical strategies have been utilized? My main findings are: Sweden acquired biobank collections from Sámi people that are not registered or cannot be traced through the biobank register at the Swedish National Board of Health and Welfare. These collections entail ethical challenges concerning how the donors are identified, how the material is categorized, the regional ethical committees, governance and Sámi representation. My suggestions focus on transparency and traceability, competence and native peoples' rights and representation in biobank-related activities.