"In this work of legal, political, and moral theory, Joseph William Singer offers a controversial new view of property and the entitlements and obligations of its owners. Singer argues against the conventional understanding that owners have the right to control their property as they see fit, with few limitations by government. Instead, property should be understood as a mode of organizing social relationships, he says, and he explains the potent consequences of this idea."--BOOK JACKET.Title Summary field provided by Blackwell North (...) America, Inc. All Rights Reserved. (shrink)

Large-scale genetics cohort studies that link genotypic and phenotypic information hold special promise for clinical medicine, but they demand long-term investment and enduring trust from human research participants. Currently, there are a handful of large-scale studies that aim to succeed where others have failed, seeking to generate significant private-sector investment while preserving long-term interest and trust of studied communities. With project planners looking for new modes of managing such complex collective endeavors, the idea of using a charitable trust structure for (...) genomic biobanks has received increasing scholarly and policy attention. This article clarifies how thorny questions around property rights, the right to withdraw from research, access to materials, and funding might be handled within such a charitable trust structure to help produce a viable participatory framework for genomics. (shrink)

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. (shrink)

Biobanks that are run on an opt-in basis depend on people having the motivation to give and to trust in those who control their samples. Yet in the UK trust in the healthcare system has been in decline and there have been a number of health-related scandals that have received widespread media and public attention. Given this background, and the previous public consultations on UK Biobank, the paper explores the way people express their trust and mistrust in the area of (...) medical and genetic information through discussions in six focus groups held in different areas of Britain. The themes that emerged in the discussion were the special character of genetic data; the ease with which information spreads; the public/private divide in genetic research; the potential of genetic information to harm people; choice, consent and lack of control; and the difficulty of establishing trustworthy governing arrangements. The expert agenda of policy-makers and medical ethics does not address the broader concerns expressed by participants. It seems that public consultation and the language of openness and transparency may not be sufficient to establish trust in the governance of genetic databases. Donors will be asked to give freely without any return but the participants' perception of those using the samples is that they are motivated by success and profit rather than healthcare priorities. In this context altruism seems naive and even dangerous. In order to place their trust well people need evidence of a relationship with obligations and expectations on both sides. (shrink)