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Klaus Hoeyer

Publications and source records attributed to Klaus Hoeyer.

10 recordsLinked to original sources
PubMed2006

The ethics of functional genomics: same, same, but different?

Respect for human life--a notion of worth uniting all members of the human race--constitutes a sense of anthropocentrism that has long been the justification for the enrollment of animals in experimentation executed to develop therapies to alleviate human suffering. Currently, however, advances in functional genomics are causing a qualitative transformation of the rationale for medical research performed on animals. The notion of human distinctness is being fundamentally challenged when gene sequences similar to those found in humans are identified in different species. In this Opinion article, we would like to highlight an inherent tension brought about by the current developments in functional genomics: a tension between the scientific and the ethical status of gene sequences. Is it reasonable to argue that they are the same for all practical purposes but different in ethical status?

Animal Rights↗
PubMed2006

Motivating donors to genetic research? Anthropological reasons to rethink the role of informed consent.

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.

Anthropology, Cultural↗
PubMed2006

The power of ethics: a case study from Sweden on the social life of moral concerns in policy processes.

In this paper I report on an ethnographic study of an ethics policy developed by a start-up genomics company at the time it gained all commercial rights to a population-based biobank in the town of Umeå in northern Sweden. Tracing the interdependencies between power and morality, my research compares moral reflections and stances among 1) policymakers, 2) health professionals and 3) donors, in relation to the issues identified in the policy. These people seem to agree that trust and fairness are important issues and that 'something' needs protection in the face of commercial genetic research. However, their perceptions of trust, fairness and what it is that needs protection differ significantly. I conclude by considering the implications of variances in moral perspectives for the social study of ethics.

Anthropology, Cultural↗
PubMed2005

Conflicting notions of research ethics. The mutually challenging traditions of social scientists and medical researchers.

Tensions over ethics in research occasionally arise when anthropologists and other social scientists study health services in medical institutions. In order to resolve this type of conflict, and to facilitate mutual learning rather than mutual recrimination, we describe two general categories of research ethics framing: those of anthropology and those of medicine. The latter, we propose, has tended to focus on protection of the individual through preservation of autonomy-principally expressed through the requirement of informed consent-whereas the former has attended more to political implications. After providing few examples of concrete conflicts, we outline four issues that characterise the occasional clashes between social scientists and medical staff, and which deserve further consideration: (1) a discrepancy in the way anthropologists perceive patients and medical staff; (2) ambiguity concerning the role of medical staff in anthropological research; (3) impediments to informed consent in qualitative research projects; and (4) property rights in data. Our contention is that enhanced dialogue could serve to invigorate the ethical debate in both traditions.

Anthropology↗
PubMed2005

The ethics of research using biobanks: reason to question the importance attributed to informed consent.

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.

Biotechnology↗
PubMed2004

Governing UK Biobank: the importance of ensuring public trust.

In the autumn of 2003, UK Biobank published the first draft of its Ethics and Governance Framework. Subsequently, this document has been available for interested parties to comment on and the UK Biobank Board of Directors is expected to adopt the final version in 2004. Here, we aim to contribute to this process and highlight to a wider audience some of the inconsistencies in the issues of consent, governance and right of withdrawal that emerge from the draft of the Framework. These issues will have implications for securing the public trust and long-term support that the success of the project depends on. Therefore, they must be considered carefully because the UK Biobank will be the first ever genetic database of a general population of this size to become operational, and will be used as a model for other projects of this kind.

Biological Specimen Banks↗
PubMed2004

Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research.

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.

Adolescent↗
PubMed2003

'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.

In Vasterbotten 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.

Biological Specimen Banks↗
PubMedDate not supplied

The role of ethics in commercial genetic research: notes on the notion of commodification.

The emergence of exchange systems for new bodily entities such as organs, cell lines, and tissue samples has generated increasing ethical concern. Concurrently, the role of ethics is becoming contested. Some social scientists have sought to reveal ethics policies as veils for commercial exploitation, masking the crude commodification of the human body. Other social scientists and ethicists have attempted to carve out a role for ethics as a defense against such, presumably violent, market forces. This article seeks an alternative rout. In analyzing the commercialization of a particular Swedish biobank, it suggests that we are in fact witnessing a process of decommodification and that ethics policies do indeed play a central role in this. However, concomitantly, ethics can be seen to veil the commodification not of bodily entities but, rather, of research results. When approaching these processes it is suggested that we analyze the interrelatedness of moral reasoning and forms of exchange.

Biological Specimen Banks↗