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Life Sciences, Society and Policy

Haley Schuster, Steven L Peck
The colonization of a new planet will inevitably bring about new bioethical issues. One is the possibility of pregnancy during the mission. During the journey to the target planet or moon, and for the first couple of years before a colony has been established and the colony has been accommodated for children, a pregnancy would jeopardize the safety of the crew and the wellbeing of the child. The principal concern with a pregnancy during an interplanetary mission is that it could put the entire crew in danger...
December 2016: Life Sciences, Society and Policy
Ellen-Marie Forsberg, Barbara Ribeiro, Nils B Heyen, Rasmus Øjvind Nielsen, Erik Thorstensen, Erik de Bakker, Lars Klüver, Thomas Reiss, Volkert Beekman, Kate Millar
Emerging science and technologies are often characterised by complexity, uncertainty and controversy. Regulation and governance of such scientific and technological developments needs to build on knowledge and evidence that reflect this complicated situation. This insight is sometimes formulated as a call for integrated assessment of emerging science and technologies, and such a call is analysed in this article. The article addresses two overall questions. The first is: to what extent are emerging science and technologies currently assessed in an integrated way...
December 2016: Life Sciences, Society and Policy
Hub Zwart, Laurens Landeweerd, Pieter Lemmens
No abstract text is available yet for this article.
December 2016: Life Sciences, Society and Policy
Jozef Keulartz, Henk van den Belt
Since 2008, we witness the emergence of the Do-It-Yourself Biology movement, a global movement spreading the use of biotechnology beyond traditional academic and industrial institutions and into the lay public. Practitioners include a broad mix of amateurs, enthusiasts, students, and trained scientists. At this moment, the movement counts nearly 50 local groups, mostly in America and Europe, but also increasingly in Asia. Do-It-Yourself Bio represents a direct translation of hacking culture and practicesfrom the realm of computers and software into the realm of genes and cells...
December 2016: Life Sciences, Society and Policy
Simone Arnaldi, Guido Gorgoni
The notion of Responsible Research and Innovation (RRI) has increasingly attracted attention in the academic literature. Up until now, however, the literature has focused on clarifying the principles for which research and innovation are responsible and on examining the conditions that account for managing them responsibly. Little attention has been reserved to exploring the political-economic context in which the notion of RRI has become progressively more prominent. This article tries to address this aspect and suggests some preliminary considerations on the connections between the specific understanding of responsibility in RRI and the framing of responsibility in what has been synthetically defined as 'neoliberalism'...
December 2016: Life Sciences, Society and Policy
Emanuele Bardone, Marianne Lind
The term Responsible Research and Innovation has recently gained currency, as it has been designated to be a key-term in the European research framework Horizon 2020. At the level of European research policy, Responsible Research and Innovation can be viewed as an attempt to reach a broader vision of research and innovation as a public good. The current academic debate may be fairly enriched by considering the role that phronesis may have for RRI. Specifically, in this paper we argue that the current debate might be fruitfully enriched by making a categorial shift...
December 2016: Life Sciences, Society and Policy
Bradley Steven O Thornock
Whole genome sequencing (WGS) can be a cost-effective and efficient means of diagnosis for some children, but it also raises a number of ethical concerns. One such concern is how researchers derive and communicate results from WGS, including future requests for further analysis of stored sequences. The purpose of this paper is to think about what is at stake, and for whom, in any solution that is developed to deal with such requests. To accomplish this task, this paper will utilize stakeholder theory, a common method used in business ethics...
2016: Life Sciences, Society and Policy
Raymond G De Vries, Tom Tomlinson, H Myra Kim, Chris D Krenz, Kerry A Ryan, Nicole Lehpamer, Scott Y H Kim
Donors to biobanks are typically asked to give blanket consent, allowing their donation to be used in any research authorized by the biobank. This type of consent ignores the evidence that some donors have moral, religious, or cultural concerns about the future uses of their donations - concerns we call "non-welfare interests". The nature of non-welfare interests and their effect on willingness to donate to a biobank is not well understood.In order to better undersand the influence of non-welfare interests, we surveyed a national sample of the US population (in June 2014) using a probability-based internet panel...
2016: Life Sciences, Society and Policy
Myra Cheng
No abstract text is available yet for this article.
2016: Life Sciences, Society and Policy
Kiran Pohar Manhas, Stacey Page, Shawn X Dodd, Nicole Letourneau, Aleta Ambrose, Xinjie Cui, Suzanne C Tough
BACKGROUND: Data sharing presents several challenges to the informed consent process. Unique challenges emerge when sharing pediatric or pregnancy-related data. Here, parent preferences for sharing non-biological data are examined. METHODS: Groups (n = 4 groups, 18 participants) and individual interviews (n = 19 participants) were conducted with participants from two provincial, longitudinal pregnancy cohorts (AOB and APrON). Qualitative content analysis was applied to transcripts of semi-structured interviews...
2016: Life Sciences, Society and Policy
Hiroshi Mizuno, Hidenori Akutsu, Kazuto Kato
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 tissue, which may lead to infringing upon the identity of the human species, and thus impairing human dignity...
2015: Life Sciences, Society and Policy
Neil Stephens, Rebecca Dimond
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 the potential precariousness of biobanking practice...
2015: Life Sciences, Society and Policy
Sakari Tamminen
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...
2015: Life Sciences, Society and Policy
Myra Cheng
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...
2015: Life Sciences, Society and Policy
Nik Brown, Rosalind Williams
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 complex practical and hybrid nature of cord blood as a 'bio-object' that straddles binary conceptions of the blood economies...
2015: Life Sciences, Society and Policy
Jane Kaye, Dawn Muddyman, Carol Smee, Karen Kennedy, Jessica Bell
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 to expedite the research and to deal with the complex issues that arose...
2015: Life Sciences, Society and Policy
Laurens Landeweerd, David Townend, Jessica Mesman, Ine Van Hoyweghen
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 'Responsible Research and Innovation' (RRI)...
2015: Life Sciences, Society and Policy
Martin Boeckhout, Conor M W Douglas
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...
2015: Life Sciences, Society and Policy
Mairi Levitt
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 focuses 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...
2015: Life Sciences, Society and Policy
Aaro Tupasela, Karoliina Snell, Jose A Cañada
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, whereby specific nationalities, communities, societies, patient groups and political systems become imbued or bio-objectified with particular characteristics, such as compliant, distant, positive, commercialized or authoritarian...
2015: Life Sciences, Society and Policy
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