Parental perspectives on consent for participation in large-scale, non-biological data repositories
Conclusions
Though parent participants agree that their research data should be made available for secondary use, they believe their consent is still required. Given their understanding that obtaining and informed consent can be challenging in the case of secondary use, parents agreed that a broad, one-time consent model was acceptable, reducing the logistical burden while maintaining respect for their contribution. This broad model also maintained participant trust in the research and secondary use of their data. The broad, one-time model also reflected parents’ perspectives surrounding child invol...
Source: Life Sciences, Society and Policy - January 20, 2016 Category: Medical Ethics Source Type: research
Ethical acceptability of research on human-animal chimeric embryos: summary of opinions by the Japanese Expert Panel on Bioethics
Abstract
Human-animal chimeric embryos are embryos obtained by introducing human cells into a non-human animal embryo. It is envisaged that the application of human-animal chimeric embryos may make possible many useful research projects including producing three-dimensional human organs in animals and verification of the pluripotency of human ES cells or iPS cells in vivo. The use of human-animal chimeric embryos, however, raises several ethical and moral concerns. The most fundamental one is that human-animal chimeric embryos possess the potential to develop into organisms containing human-derived tiss...
Source: Life Sciences, Society and Policy - December 22, 2015 Category: Medical Ethics Source Type: research
Unexpected tissue and the biobank that closed: an exploration of value and the momentariness of bio-objectification processes
Abstract
Unanticipated situations can arise in biobanking. This paper empirically documents unexpected situations at the anonymous biobank ‘Xbank’. Firstly, Xbank received an unexpected and significant quantity of tissue from the historical archive of a hospital network. Secondly, Xbank had its funding withdrawn before the designated end date for the grant, meaning the bank needed to either re-house or destroy its holdings. This paper articulates and uses the theoretical frameworks of bio-objectification and tissue economies to analyse the experiences of Xbank and draw out further implications of th...
Source: Life Sciences, Society and Policy - December 2, 2015 Category: Medical Ethics Source Type: research
Bio-objectifying European bodies: standardisation of biobanks in the Biobanking and Biomolecular Resources Research Infrastructure
Abstract
The article traces the genealogy of the Minimum Information About Biobank Data Sharing model, created in the European Biobanking and Biomolecular Resources Research Infrastructure to facilitate collaboration among biobanks and to foster the exchange of biological samples and data. This information model is aimed at the identification of biobanks; unification of databases; and objectification of the information, samples, and related studies – to create a completely new ‘bio-object infrastructure’ within the EU. The paper discusses key challenges in creating a ‘universal’ information mo...
Source: Life Sciences, Society and Policy - December 1, 2015 Category: Medical Ethics Source Type: research
Islet Xeno/transplantation and the risk of contagion: local responses from Canada and Australia to an emerging global technoscience
Abstract
This paper situates the public debate over the use of living animal organs and tissue for human therapies within the history of experimental islet transplantation. Specifically, the paper compares and contrasts the Canadian and Australian responses on xenotransplantation to consider what lessons can be learnt about the regulation of a complex and controversial biotechnology. Sobbrio and Jorqui described public engagement on xenotransplantation in these countries as ‘important forms of experimental democracy.’ While Canada experimented with a novel nation-wide public consultation, Australia ...
Source: Life Sciences, Society and Policy - October 23, 2015 Category: Medical Ethics Source Type: research
Cord blood banking – bio-objects on the borderlands between community and immunity
Abstract
Umbilical cord blood (UCB) has become the focus of intense efforts to collect, screen and bank haematopoietic stem cells (HSCs) in hundreds of repositories around the world. UCB banking has developed through a broad spectrum of overlapping banking practices, sectors and institutional forms. Superficially at least, these sectors have been widely distinguished in bioethical and policy literature between notions of the ‘public’ and the ‘private’, the commons and the market respectively. Our purpose in this paper is to reflect more critically on these distinctions and to articulate the comp...
Source: Life Sciences, Society and Policy - October 8, 2015 Category: Medical Ethics Source Type: research
‘Pop-Up’ Governance: developing internal governance frameworks for consortia: the example of UK10K
Abstract
Innovations in information technologies have facilitated the development of new styles of research networks and forms of governance. This is evident in genomics where increasingly, research is carried out by large, interdisciplinary consortia focussing on a specific research endeavour. The UK10K project is an example of a human genomics consortium funded to provide insights into the genomics of rare conditions, and establish a community resource from generated sequence data. To achieve its objectives according to the agreed timetable, the UK10K project established an internal governance system ...
Source: Life Sciences, Society and Policy - September 28, 2015 Category: Medical Ethics Source Type: research
Services in the self: embodied labor and the global bioeconomy
Abstract
This review article discusses Melinda Cooper and Catherine Waldby’s recent book, Clinical Labor. Tissue donors and research subjects in the global bio-economy (Duke, 2014), as a topical contribution to the literatures on the bio-economy, and to studies of life sciences, society, and policy more generally. The article contextualizes the book within existing literatures (1) and thoroughly considers its conceptual approach as well as its findings (2). Further, it discusses its value as a contribution, arguing that clinical labor also presents an intriguing framework for further research, thereby...
Source: Life Sciences, Society and Policy - September 14, 2015 Category: Medical Ethics Source Type: research
Reflections on different governance styles in regulating science: a contribution to ‘Responsible Research and Innovation’
Abstract
In European science and technology policy, various styles have been developed and institutionalised to govern the ethical challenges of science and technology innovations. In this paper, we give an account of the most dominant styles of the past 30 years, particularly in Europe, seeking to show their specific merits and problems. We focus on three styles of governance: a technocratic style, an applied ethics style, and a public participation style. We discuss their merits and deficits, and use this analysis to assess the potential of the recently established governance approach of ‘Responsib...
Source: Life Sciences, Society and Policy - August 11, 2015 Category: Medical Ethics Source Type: research
Governing the research-care divide in clinical biobanking: Dutch perspectives
Abstract
Biobanking, the large-scale, systematic collection of data and tissue for open-ended research purposes, is on the rise, particularly in clinical research. The infrastructures for the systematic procurement, management and eventual use of human tissue and data are positioned between healthcare and research. However, the positioning of biobanking infrastructures and transfer of tissue and data between research and care is not an innocuous go-between. Instead, it involves changes in both domains and raises issues about how distinctions between research and care are drawn and policed. Based on an a...
Source: Life Sciences, Society and Policy - August 6, 2015 Category: Medical Ethics Source Type: research
Could the organ shortage ever be met?
Abstract
The organ shortage is commonly presented as having a clear solution, increase the number of organs donated and the problem will be solved. In the light of the Northern Ireland Assembly’s consultation on moving to an opt-out organ donor register this article focusses on the social factors and complexities which impact strongly on both the supply of, and demand for, transplantable organs. Judging by the experience of other countries presumed consent systems may or may not increase donations but have not met demand. Donation rates have risen considerably in all parts of the UK recently but there...
Source: Life Sciences, Society and Policy - July 23, 2015 Category: Medical Ethics Source Type: research
Constructing populations in biobanking
This article poses the question of whether biobanking practices and standards are giving rise to the construction of populations from which various biobanking initiatives increasingly draw on for legitimacy? We argue that although recent biobanking policies encourage various forms of engagement with publics to ensure legitimacy, different biobanks conceptualize their engagement strategies very differently. We suggest that biobanks undertake a broad range of different strategies with regard to engagement. We argue that these different approaches to engagement strategies are contributing to the construction of populations, w...
Source: Life Sciences, Society and Policy - July 21, 2015 Category: Medical Ethics Source Type: research
Direct to consumer testing in reproductive contexts – should health professionals be concerned?
Abstract
Direct to consumer genetic testing offered via the Internet has been available for over a decade. Initially most tests of this type were offered without the input of the consumer’s own health professional. Ethical and practical concerns have been a raised over the use of such tests: these include fulfilling the requirement for informed consent, utility of results for health care management and the potential burden placed upon health services by people who have taken tests.
These tests now have an application in reproductive healthcare. The advent of non-invasive prenatal t...
Source: Life Sciences, Society and Policy - April 28, 2015 Category: Medical Ethics Source Type: research
Challenges of web-based personal genomic data sharing
Abstract
In order to study the relationship between genes and diseases, the increasing availability and sharing of phenotypic and genotypic data have been promoted as an imperative within the scientific community. In parallel with data sharing practices by clinicians and researchers, recent initiatives have been observed in which individuals are sharing personal genomic data. The involvement of individuals in such initiatives is facilitated by the increased accessibility of personal genomic data, offered by private test providers along with availability of online networks. Personal webpages and on-line ...
Source: Life Sciences, Society and Policy - March 27, 2015 Category: Medical Ethics Source Type: research
ELSA and RRI – Editorial
Abstract
This editorial presents the background for the article collection ‘ELSA and RRI’. It sets the stage for the topics discussed in the collection and briefly presents the different contributions. It concludes by opening up for continued discussion of the relations between ELSA and RRI. (Source: Life Sciences, Society and Policy)
Source: Life Sciences, Society and Policy - January 29, 2015 Category: Medical Ethics Source Type: research
