1985 witnessed the origins of a population-based biobank in Västerbotten County, Sweden. In 1999, a start-up genomics company, UmanGenomics, obtained ‘all commercial rights’ to the biobank. The corporation released an ethics policy that was appreciated in prestigious journals, concentrating on public oversight and informed consent.
To understand more about how social anthropology can help familiarity with the difficulties posed by the new role of the biobank in Västerbotten, and hence complement more established traditions in the area of medical ethics. An anthropological research of the ethics policy was executed.
Motivated by the anthropology of policy and social science perspectives on ethics and morality, the policy was analyzed at 3 analytical levels: policymakers (who formulate the policy), policy workers (who apply the policy, mainly nurses who obtain informed consent) and target group (for whom and on whom the policy is supposed to work: the possible donors to the biobank).
Policymakers, nurses, and potential donors were interviewed, donations observed, and official documents analysed to mirror the moral problematizations made at the three levels in each other and to research the practical implications of the policy. To extend the reliability of the findings two surveys were executed: one among the general population, one among donors.
Contents
CHAPTER 1: INTRODUCTION
1.1 Entering the field: the case of UmanGenomics
1.1.1 Background
1.2 An anthropological contribution to medical ethics
1.2.1 The making of an anthropological study
1.2.2 Research questions
1.2.3 Why study the ethics policy?
1.3 Structure of the thesis
CHAPTER 2: LITERATURE REVIEW AND THEORETICAL PERSPECTIVES
2.1 Studies of biobanks and genetic research
2.1.1 The normative medical ethical debate about biobanks
2.1.2 Empirical studies of biobank research in medical ethics
2.1.3 STS: The regulation and public understanding of genetic research
2.2 Ethics, morality and bioethics
2.2.1 Social science perspectives on ethics and morality
2.2.2 Moral economies and exchange studies
2.2.3 Social science perspectives on bioethics
2.3 The theoretical framework: key concepts
2.3.1 The perspective from policy studies
2.3.2 Integrating the social study of morality into the policy approach
CHAPTER 3: METHODS
3.1 Turning theory into research practice: the actual ethics policy
3.2 Methodological principle
3.3 Practical conduct
3.3.1 Practical conduct at the level of policymakers
3.3.2 Practical conduct at the level of policy workers
3.3.3 Practical conduct at the level of the policy target group
3.4 Quantitative methods
3.4.1 Generating the questions
3.4.2 Practicalities
3.4.3 Comparison between the surveys
3.5 Mode of analysis
3.5.1 Validity and reliability
3.5.2 Interpreting interviews
3.5.3 Making an analysis
3.6 Methodological problems
CHAPTER 4: RESULTS
4.1 Policymaking: The naming and framing of moral problems
4.1.1 The focus on informed consent
4.1.2 The issue of commodification: distinguishing blood from information
4.2 Entrenchment of the policy
4.2.1 Keeping blood out of the market
4.2.2 Informed consent and divergent notions of responsibility
4.3 The target group: attitudes and policy implications
4.3.1 Conflicting notions of personhood
4.3.2 Informed consent procedures and the presumed lack of information
4.3.3 Quantification of the qualitative findings
4.4 Summarising results
CHAPTER 5: DISCUSSION
5.1 Reflections on the findings
5.1.1 Sorting out a paradox
5.1.2 Informed consent and the politics of ambiguity
5.1.3 Divergent understandings of trust, infringement and fairness
5.2 From ‘is’ to ‘ought’?
5.2.1 The naturalistic fallacy and its disputes
5.2.2 Prescription vs. description in the social sciences
5.3 Governance of biobanks in Sweden
5.3.1 Turning the analytical gaze to the structures of biobanking
5.3.2 How to handle the issue of informed consent?
5.4 The anthropological contribution
CHAPTER 6: RESEARCH ETHICAL REFLECTIONS
6.1 Between social science and medical ethics
6.2 Practical conduct
6.2.1 Issues of particular importance when studying policymakers
6.2.2 Consent from nurses
6.2.3 Consent from potential donors………..
Source: Umea University
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