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8 recordsLinked to original sources
PubMed2006

From hype to mothballs in four years: troubles in the development of large-scale DNA biobanks in Europe.

This paper analyses the difficulties experienced by three large European DNA biobanks. The first, Icelandic-based deCode, generated immense commercial interest and intense ethical controversy. As a biotechnology company, deCode succeeded, but the Icelandic Health Sector Data Base failed. The second firm, Swedish UmanGenomics, marketed itself as the 'ethical' biotech company. Management problems including the inadequate recognition of intellectual property issues led to the company failing to secure adequate investment. The third and largest, UK Biobank, has, as a non-profit organization, not experienced these problems. But when the product - bio information--is marketed, the issue of ethically acceptable purchasers could well become contentious.

Computational Biology↗
PubMed2003

Common-pool resources and population genomics in Iceland, Estonia, and Tonga.

This paper addresses the application of the ethical concept of trust and the legal and political concept of public trust to population genomics projects in Iceland, Estonia, and Tonga. Focusing on trust and public trust, the paper explores analogies between the genomics projects and the treatment of other common-pool resources, making use of the notion of trust as an ethical demand, derived from the works of Emmanuel Levinas and Knud Eljer Løgstrup. The paper discusses the degree to which the ethical demands for trust and public trust have been established and maintained in the three national population genomics projects.

Confidentiality↗
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↗
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↗