The intersection of relational autonomy and narrative ethics for the patient unwilling to disclose genetic diagnosis information
Abstract
The rare case of the patient unwilling to disclose genetic data to his or her family provides an opportunity to expand the atomistic conception of the autonomous individual in medical decision-making. Medical practitioners naturally avoid violating patient autonomy and privacy. However, unwilling disclosure can damage the health of people other than the patient. In this situation, professionals must weigh the principle of autonomy against the nature of relationships, duties, and confidentialities between patient, professional, and family. The paradigm case studied is that of a patient with a po...
Source: Life Sciences, Society and Policy - March 18, 2014 Category: Medical Ethics Source Type: research
Open Genetic Code: on open source in the life sciences
Abstract
The introduction of open source in the life sciences is increasingly being suggested as an alternative to patenting. This is an alternative, however, that takes its shape at the intersection of the life sciences and informatics. Numerous examples can be identified wherein open source in the life sciences refers to access, sharing and collaboration as informatic practices. This includes open source as an experimental model and as a more sophisticated approach of genetic engineering. The first section discusses the greater flexibly in regard of patenting and the relationship to the introduction o...
Source: Life Sciences, Society and Policy - January 9, 2014 Category: Medical Ethics Source Type: research
Institutionalising ELSA in the moment of breakdown?
This article discusses outcomes of a dialogue conference on ‘The road ahead for ELSA in Norway: Issues of quality, influence and network cooperation’ held in Oslo in December 2012. Norwegian researchers in the field of ethical, legal and social aspects of technologies (ELSA) were invited to discuss conceptual and strategic issues, as well as the setup of a researcher network. In the article I take an institutionalist approach and discuss challenges in institutionalising an ELSA network at a time when a designated ELSA funding programme is coming to an end. The research question is how the Norwegian ELSA network can suc...
Source: Life Sciences, Society and Policy - January 3, 2014 Category: Medical Ethics Source Type: research
Perceptions of nature, nurture and behaviour
Abstract
Trying to separate out nature and nurture as explanations for behaviour, as in classic genetic studies of twins and families, is now said to be both impossible and unproductive. In practice the nature-nurture model persists as a way of framing discussion on the causes of behaviour in genetic research papers, as well as in the media and lay debate. Social and environmental theories of crime have been dominant in criminology and in public policy while biological theories have been seen as outdated and discredited. Recently, research into genetic variations associated with aggressive and antisocia...
Source: Life Sciences, Society and Policy - December 12, 2013 Category: Medical Ethics Source Type: research
Forensic DNA databases in European countries: is size linked to performance?
This article aims to provide an overview of the different legislative models for DNA databasing in Europe and ponder if wider inclusion criteria – and, consequently, database size – translates into more matches between profiles of crime scene stains and included individuals (performance ratio). The legislation governing forensic DNA databases in 22 countries in the European Union was analysed in order to propose a typology of two major groups of legislative criteria for inclusion/retention of profiles that can be classified as having either expansive effects or restrictive effects. We argue that expansive criteria for ...
Source: Life Sciences, Society and Policy - December 3, 2013 Category: Medical Ethics Source Type: research
Bringing in the controversy: re-politicizing the de-politicized strategy of ethics committees
Abstract
Human/animal relations are potentially controversial and biotechnologically produced animals and animal-like creatures – bio-objects such as transgenics, clones, cybrids and other hybrids – have often created lively political debate since they challenge established social and moral norms. Ethical issues regarding the human/animal relations in biotechnological developments have at times been widely debated in many European countries and beyond. However, the general trend is a move away from parliamentary and public debate towards institutionalized ethics and technified expert panels. We expl...
Source: Life Sciences, Society and Policy - November 11, 2013 Category: Medical Ethics Source Type: research
The lore of low methane livestock: co-producing technology and animals for reduced climate change impact
Abstract
Methane emissions from sheep and cattle production have gained increasing profile in the context of climate change. Policy and scientific research communities have suggested a number of technological approaches to mitigate these emissions. This paper uses the concept of co-production as an analytical framework to understand farmers’ evaluation of a 'good animal’. It examines how technology and sheep and beef cattle are co-produced in the context of concerns about the climate change impact of methane. Drawing on 42 semi-structured interviews, this paper demonstrates that methane emissions ar...
Source: Life Sciences, Society and Policy - October 17, 2013 Category: Medical Ethics Source Type: research
Frankenstein 2.0.: Identifying and characterising synthetic biology engineers in science fiction films
Abstract
Synthetic biology (SB) has emerged as one of the newest and promising areas of bio-technology. Issues typically associated to SB, notably in the media, like the idea of artificial life creation and “real” engineering of life also appear in many popular films. Drawing upon the analysis of 48 films, the article discusses how scientists applying technologies that can be related to SB are represented in these movies. It hereby discusses that traditional clichés of scientists in general tend to be sublated by new stereotypical characterizations. These reflect real trends in bio-technological re...
Source: Life Sciences, Society and Policy - October 1, 2013 Category: Medical Ethics Source Type: research
The bioinformatics of genetic origins: how identities become embedded in the tools and practices of bioinformatics
Abstract
In the life sciences, where large data sets are increasingly setting the stage for research, the role of bioinformatics is expanding. This has far-reaching consequences, not only for the way research is done, but also for the way this research affects our understanding of human identity. Using two case studies of practices involving bioinformatics, the software program Structure and the Genome of the Netherlands project, I will argue that bioinformatics and its tools can be understood as ‘infrastructure’ as described by Bowker and Star. A number of value decisions are involved in the develo...
Source: Life Sciences, Society and Policy - September 13, 2013 Category: Medical Ethics Source Type: research
Patient and family trajectories of mitochondrial disease: diversity, uncertainty and genetic risk
This article draws on qualitative interviews with adult patients to explore the practical realities of living with mitochondrial disease. Three key themes were identified; the personal and familial experiences of illness, age and generation as factors in shaping patient experience and the importance of experiential knowledge in making sense of reproductive choice. Overall, this article identifies potential barriers to patients accessing reproductive technologies highlighting how the complex nature and uncertain trajectory of mitochondrial disease poses considerable challenges for patients, practitioners and policy makers. ...
Source: Life Sciences, Society and Policy - April 15, 2013 Category: Medical Ethics Source Type: research
Neglected ethical issues in biobank management: Results from a U.S. study
Abstract
The empirical literature on the ethical, legal, and social implications (ELSI) of biobanking has almost entirely relied on the perspectives of those outside of biobanks, such as the general public, researchers, and specimen contributors. Little attention has been paid to the perspectives and practices of those who operate biobanks. We conducted a study of U.S. biobanks consisting of six in-depth case studies and a large online survey (N = 456), which was developed from the case study results. The case studies included qualitative interviews with a total of 24 personnel. Both interview and surve...
Source: Life Sciences, Society and Policy - March 27, 2013 Category: Medical Ethics Source Type: research
