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- Hoeyer, Klaus, 1972-
(författare)
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Biobanks and informed consent : An anthropological contribution to medical ethics
- 2004
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: 1985 saw the beginnings 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 company introduced an ethics policy, which was well received in prestigious journals, focusing on public oversight and informed consent. Aims: To explore how social anthropology can aid understanding of the challenges posed by the new role of the biobank in Västerbotten, and thus complement more established traditions in the field of medical ethics. An anthropological study of the ethics policy was executed. Theoretical perspective: Inspired by the anthropology of policy and social science perspectives on ethics and morality, the policy was studied at three analytical levels: policymakers (who formulate the policy), policy workers (who implement the policy, primarily nurses who obtain informed consent) and target group (for whom and on whom the policy is supposed to work: the potential donors to the biobank). Methods: 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 study 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. Results: The qualitative studies show that policymakers distinguish between blood and data differently to potential donors. Informed consent seems more important to policymakers than potential donors, who are more concerned about political implications at a societal level. Among the respondents from the survey in the general public, a majority (66.8%) accepted surrogate decisions by Research Ethics Committees; a minority (4 %) stated informed consent as a principal concern; and genetic research based on biobank material was generally accepted (71%). Among the respondents to the survey in donors, 65% knew they had consented to donate a blood sample, and 32% knew they could withdraw their consent; 6% were dissatisfied with the information they had received; and 85% accepted surrogate decisions by Research Ethics Committees. Discussion: The ethics policy constitutes a particular naming and framing of moral problems in biobank-based research which overemphasises the need for informed consent, and underemphasises other concerns of potential donors. This embodies a political transformation where access to stored blood and medical information is negotiated in ethical terms, while it also has unacknowledged political implications. In particular, the relations between authorities and citizens in the Swedish welfare state are apparently transforming: from mutual obligation to individual contracts. Conclusion: Anthropology contributes to medical ethics with increased awareness of the practical implications of particular research ethical initiatives. This awareness promotes appreciation of the political implications of ethics policies and raises new issues for further consideration.
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| 3. |
- Hoeyer, Klaus, et al.
(författare)
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Informed Consent and Biobanks : A Population-Based Study of Attitudes Towards Tissue Donation for Genetic Research
- 2004
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Ingår i: Scandinavian Journal of Public Health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 32:3, s. 524-529
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Tidskriftsartikel (refereegranskat)abstract
- AIMS: The procurement and usage of tissue samples has begun receiving increasing legal and ethical attention. The authors' aim was to develop an empirically based understanding of public attitudes to the use of tissue for research. METHOD: A questionnaire was distributed to a randomized sample (n=1,000) of the population in the age group 18-85 in Västerbotten County, Sweden. RESULTS: The response rate was approximately 60%. There was a general acceptance of genetic research based on biobank material (71%) but, though it is often a prerequisite for tissue-based research, a majority (62%) would not allow researchers to examine their healthcare records without specific consent. A majority (66.8%) accepted surrogate decisions by research ethical committees; 48% of the respondents estimated that they would feel respected if they were notified each time a sample was used. When compared and ranked with other issues, informed consent was a principal concern to a minority (4%) only. Should research efforts generate information on future health risks, a majority (55%) would want to be told only if treatment was available. CONCLUSION: Though genetic research in bioethical debate is often viewed as a potential threat to the integrity of the donor, the confidentiality of medical records still seems to concern donors more. Research ethical committees have support in the majority of the population for some surrogate decisions. The current emphasis on the question of informed consent in policy making for biobank-based research does not seem to be reflected unambiguously in the concerns of the general public.
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| 5. |
- Hoeyer, Klaus, et al.
(författare)
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Motivating donors to genetic research? Anthropological reasons to rethink the role of informed consent.
- 2006
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Ingår i: Medicine, Health care and Philosophy. - : Springer Science and Business Media LLC. - 1386-7423 .- 1572-8633. ; 9:1, s. 13-23
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Tidskriftsartikel (refereegranskat)abstract
- In this article we explore the contribution from social anthropology to the medical ethical debates about the use of informed consent in research, based on blood samples and other forms of tissue. The article springs from a project exploring donors' motivation for providing blood and healthcare data for genetic research to be executed by a Swedish start-up genomics company. This article is not confined to empirical findings, however, as we suggest that anthropology provides reason to reassess the theoretical understanding of autonomy as generally defined by Beauchamp and Childress. Careful consideration of the trust expressed by donors through the act of donation, furthermore, suggests that there is reason to redirect the ethical scrutiny from informed consent to issues concerning institutional arrangements and social responsibility. In particular, we suggest that an anthropological approach could facilitate a reconsideration of the political implications of using informed consent as a regulatory practice in tissue-based research.
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| 6. |
- Hoeyer, Klaus
(författare)
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“Science Is Really Needed – That’s All I Know” : Informed Consent and the Non-Verbal Practices of Collecting Blood for Genetic Research in Northern Sweden
- 2003
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Ingår i: New genetics and society (Print). - : Informa UK Limited. - 1463-6778 .- 1469-9915. ; 22:3, s. 229-244
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Tidskriftsartikel (refereegranskat)abstract
- In Västerbotten County in northern Sweden a start-up biotech company has recently gained all commercial rights to one of the worlds largest population based research biobanks. The biobank and the company have publicly emphasized that all donors have given their informed consent to participate, but within the academy it has become debated whether people have been adequately informed. Based on anthropological fieldwork it is shown that many people do not read the information provided. The data do not, however, suggest that donors themselves perceive a lack of information. This article endeavours to make meaningful the apparent lack of interest among donors in the information they are offered. It is argued that the donation of blood should be analysed in its social and historical context rather than as a response to rational assessment of information of research purposes. It implies a conceptualisation of agency more aware of the intersubjective nature of moral negotiation than usually implied in studies of informed consent.
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| 7. |
- Hoeyer, Klaus, et al.
(författare)
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The ethics of research using biobanks : reason to question the importance attributed to informed consent.
- 2005
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Ingår i: Archives of Internal Medicine. - : American Medical Association (AMA). - 0003-9926 .- 1538-3679. ; 165:1, s. 97-100
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: During the past decade, the use of stored tissue has become an object of increased ethical query. A Swedish biobank and a biotech company have been praised for solving the ethical problems with explicit informed consent procedures, and we decided to investigate donors' perceptions of the system. METHODS: A questionnaire was sent to a randomized sample of 1200 donors who had donated blood and signed informed consent forms. RESULTS: The response rate was 80.9%. Of the respondents, 64.5% were aware that they had consented to donate a blood sample, 55.4% thought that they had consented to donate phenotypic information, and 31.6% believed that they could withdraw their consent. Among respondents, 3.9% considered informing donors about the research objective as the most important ethical issue in relation to biobanks, and 5.6% were unsatisfied with the information they had been given. There was 85.9% acceptance of surrogate decision making by regional research ethics committees. CONCLUSIONS: Considering that the donors in this study were not always aware of their donation but generally were not unsatisfied with the information they had received, and that they did not rate being informed about the research objective as an important issue, informed consent seems to be an inadequate measure of public acceptance of biobank-based research.
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| 8. |
- Lutz, Peter A.
(författare)
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Tinkering Care Moves : Senior Home Care in Practice
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This dissertation builds on the current anthropological studies of care relations in practice. It draws inspiration from science and technology studies (STS) and postfeminist technoscience. A qualitative ethnographic approach grounds the empirical data collection and analysis. This entails ethnographic fieldwork with senior home care in the United States and Sweden during 2007–2008 and 2011–2012. Analytical attention centers on how movements situate various tensions of senior home care in practice. Four interrelated published works comprise the main thematic chapters. Each article exemplifies how human and nonhuman relations move and mediate care. They develop several heuristic terms that advance ideas about how older people, aging bodies, technologies, spaces, and times that tinker each other through movements of care in practice. The comprehensive summary frames these articles with an overview of the primary thematic orientations and methodological concerns. A discussion of the main contributions and implications of the dissertation concludes the work.
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| 9. |
- Mohr, Sebastian, 1980-, et al.
(författare)
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The Good Sperm Cell : Ethnographic Explorations of Semen Quality
- 2018
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Ingår i: Tecnoscienza. - : The Italian Society of Science and Technology Studies STS ITALIA. - 2038-3460. ; 9:1, s. 9-28
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Tidskriftsartikel (refereegranskat)abstract
- In this article, we compare the meaning and assessment of semenquality across three different contexts: male infertility, sperm donation,and in-vitro sperm. We ask how semen quality is determined in thesethree contexts and what kind of practices and normative choices theseevaluative processes involve. While the notion of good semen quality is oftenreduced to biomedical evidence, our analysis shows that it also drawson beliefs about what is desirable and what is not, producing biomedical evidencein light of specifically desired outcomes. Unpacking semen quality, bylooking at the specificities of how it is done across three different contexts,in this article we thus move beyond comprehending quality standards aspurely technical matters and reposition biomedical assessments of male reproductivepotential in their political and normative contexts.
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