The ethics and regulation of direct-to-consumer genetic testing

A report of the workshop 'Direct-to-consumer genetic testing: ethical and regulatory issues', Oxford, UK, 21 May 2009

The canary in the coal mine: continence care for people with dementia in acute hospital wards as a crisis of dehumanization

Continence is a key moment of care that can tell us about the wider care of people living with dementia within acute hospital wards. The spotlight is currently on the quality of hospital care of older people across the UK, yet concerns persist about their poor treatment, neglect, abuse, and discrimination within this setting. Thus, within hospitals, the care of people living with dementia is both a welfare issue and a human rights issue. The challenge of continence care for people living with dementia can be seen as the ‘canary in the coal mine’ for the unravelling of dignity within the acute setting. This paper draws on an ethnographic study within five hospitals in England and Wales, selected to represent a range of hospital types, geographies and socio‐economic catchments. Observational fieldwork was carried out over 154 days in acute hospitals known to admit large numbers of people living with dementia. This paper starts to fill the gap between theory and data by providing an in‐depth ethnographic analysis examining the ways in which treatment as a person is negotiated, achieved or threatened. We examine how the twin assaults on agency of a diagnosis of dementia and of incontinence threaten personhood. The acute threats to this patient group may then act to magnify perils to treatment as a person. Our findings suggest that personal dignity and the social construction of moral personhood are both threatened and maintained in such a setting. We show how empirical ethnographic data can lend weight to, and add detail to, theoretical accounts of moral personhood and dignity

EPSRC principles of robotics: commentary on safety, robots as products, and responsibility

The EPSRC Principles of Robotics refer to safety. How safety is understood is relative to how tasks are characterised and identified. But the exact task(s) a robot plays within a complex system of agency may be hard to identify. If robots are seen as products, it is nonetheless vital that the safety and other implications of their use in situ must also be considered carefully, and they must be fit for purpose. The Principles identify humans as responsible, rather than robots. We must thus understand how the replacement of human agency by robotic agency may impact upon attributions of responsibility. The Principles seek to fit into existing systems of law and ethics. But these may need development, and in certain context, attention to more local regulations is also needed. A distinction between ethical issues related to the design of robotics, and to their use, may be needed in the Principles

Painting workshops for people living with dementia as a means of expression and communication: Revelations from our elders

Purpose: To explore art workshops for people living with dementia as a process enabling creative expression and fostering communication with others. Design/methodology/approach: To enable detailed exploration of the expressive powers of painting and drawing, we draw several examples from a series of painting workshops for people living with dementia which formed part of the PPI for research into experiences of restraint within care. Findings: Artwork enabled personal expression, facilitated conversation with others, and revealed hidden knowledge and abilities, but also revealed dangers of miscommunication, specifically here related to technological changes and spirituality. Originality: Much work in this area explores art activities for people living with dementia in terms of beneficial outcomes. Our work explores the creative process inherent in painting, drawing upon insights from art theory and providing in-depth individual insights through case studies. Both researchers in this study are artists and the work drew upon their understanding of the processes of painting. Research limitations/implications: Individual differences in responses to painting will exist. Social implications: Attention to the process of painting can be beneficial in fostering verbal and non-verbal communication with individuals who have difficulties in communication. Attention to cultural issues in care needs to incorporate understanding of spiritual and religious issues and take note of gaps in understanding related to technological as well as cultural changes between generations

Data sharing in genomics - re-shaping scientific practice

Author manuscript. Final version published by Nature. Available online at http://www.nature.com/Funding bodies have recently introduced a requirement that data sharing must be a consideration of all funding applications in genomics. As with all new developments this condition has had an impact on scientific practice, particularly in the area of publishing and in the conduct of research. We discuss the challenges that must be addressed if the full benefits of data sharing, as envisaged by funders, are to be realized

Planning for translational research in genomics

Translation of research findings into clinical practice is an important aspect of medical progress. Even for the early stages of genomics, research aiming to deepen understandings of underlying mechanisms of disease, questions about the ways in which such research ultimately can be useful in medical treatment and public health are of key importance. Whilst some research data may not apparently lend themselves to immediate clinical benefit, being aware of the issues surrounding translation at an early stage can enhance the delivery of the research to the clinic if a medical application is later found. When simple steps are taken during initial project planning, the pathways towards the translation of genomic research findings can be managed to optimize long-term benefits to health. This piece discusses the key areas of collaboration agreements, distribution of revenues and recruitment and sample collection that are increasingly important to successful translational research in genomics

Encoding Ethics to Compute Value‑Aligned Norms

Norms have been widely enacted in human and agent societies to regulate individuals’ actions. However, although legislators may have ethics in mind when establishing norms, moral values are only sometimes explicitly considered. This paper advances the state of the art by providing a method for selecting the norms to enact within a society that best aligns with the moral values of such a society. Our approach to aligning norms and values is grounded in the ethics literature. Specifcally, from the literature’s study of the relations between norms, actions, and values, we formally defne how actions and values relate through the so-called value judgment function and how norms and values relate through the so-called norm promotion function. We show that both functions provide the means to compute value alignment for a set of norms. Moreover, we detail how to cast our decision-making problem as an optimisation problem: fnding the norms that maximise value alignment. We also show how to solve our problem using of-the-shelf optimisation tools. Finally, we illustrate our approach with a specifc case study on the European Value Study

Public Access to Genome-Wide Data: Five Views on Balancing Research with Privacy and Protection

Introductory paragraph: Just over twelve months ago, PLoS Genetics published a paper [1] demonstrating that, given genome-wide genotype data from an individual, it is, in principle, possible to ascertain whether that individual is a member of a larger group defined solely by aggregate genotype frequencies, such as a forensic sample or a cohort of participants in a genome-wide association study (GWAS). As a consequence, the National Institutes of Health (NIH) and Wellcome Trust agreed to shut down public access not just to individual genotype data but even to aggregate genotype frequency data from each study published using their funding. Reactions to this decision span the full breadth of opinion, from ‘‘too little, too late—the public trust has been breached’’ to ‘‘a heavy-handed bureaucratic response to a practically minimal risk that will unnecessarily inhibit scientific research.’’ Scientific concerns have also been raised over the conditions under which individual identity can truly be accurately determined from GWAS data. These concerns are addressed in two papers published in this month’s issue of PLoS Genetics [2,3]. We received several submissions on this topic and decided to assemble these viewpoints as a contribution to the debate and ask readers to contribute their thoughts through the PLoS online commentary features. Five viewpoints are included. The Public Population Project in Genomics (P3G) is calling for a universal researcher ID with an access permit mechanism for bona fide researchers. The contribution by Catherine Heeney, Naomi Hawkins, Jantina de Vries, Paula Boddington, and Jane Kaye of the University of Oxford Ethox Centre outlines some of the concerns over possible misuse of individual identification in conjunction with medical and family history data, and points out that if geneticists mishandle public trust, it will backfire on their ability to conduct further research. George Church posits that actions directed toward restricting data access are likely to exclude researchers who might provide the most novel insights into the data and instead makes the argument that full disclosure and consent to the release of genomic information should be sought from study participants, rather than making difficult-to-guarantee promises of anonymity. Martin Bobrow weighs the risks and benefits and proposes four steps that represent a middle ground: Retain restricted access for now, make malicious de-identification practices illegal, increase public awareness of the issues, and encourage recognition that scientists have a special professional relationship of trust with study participants. Finally, Bruce Weir provides a commentary on the contribution of the two research articles from Braun et al. [2] and Visscher and Hill [3]

Ethical implications of the use of whole genome methods in medical research

The use of genome-wide association studies (GWAS) in medical research and the increased ability to share data give a new twist to some of the perennial ethical issues associated with genomic research. GWAS create particular challenges because they produce fine, detailed, genotype information at high resolution, and the results of more focused studies can potentially be used to determine genetic variation for a wide range of conditions and traits. The information from a GWA scan is derived from DNA that is a powerful personal identifier, and can provide information not just on the individual, but also on the individual's relatives, related groups, and populations. Furthermore, it creates large amounts of individual-specific digital information that is easy to share across international borders. This paper provides an overview of some of the key ethical issues around GWAS: consent, feedback of results, privacy, and the governance of research. Many of the questions that lie ahead of us in terms of the next generation sequencing methods will have been foreshadowed by GWAS and the debates around ethical and policy issues that these have created