Alena Buyx

A solidarity-based approach to the governance of research biobanks.

New opportunities for large-scale data linkage and data-mining have rendered biobanks one of the core resources of medical research in the twenty-first century. At the same time, research biobanking has been seen to pose particular ethical and legal challenges pertaining to, for example, data protection, and the minimisation of other risks for participants. These measures have in turn led to heavy administrative, logistical, and financial costs and attracted criticism for unduly impeding disease research. Based on a newly formulated approach to solidarity, we propose an approach to governance that recognises peoples willingness to participate in a public research biobank, and poses stronger emphasis on harm mitigation. We argue that such a model avoids some of the pitfalls of previous approaches. It also allows moving beyond overly restrictive and burdensome, exclusively autonomy-based governance towards governance that is reflective of peoples willingness to accept costs to assist others.

Bioethics in the Post-genomic Era

Bioethics is a rapidly developing field. It draws on conceptual and methodological tools from a number of academic disciplines to tackle ethical issues that arise within medical practice, the life sciences, health care provision and management, and related areas. From its early inception in the form of medical ethics, where it was mainly concerned with moral conflicts that played out within the relationship between doctors and patients, it has evolved into a multidisciplinary field that utilizes a wealth of theoretical and methodological approaches to address a variety of moral and practical questions. This article focuses on the most recent developments of bioethics in the so-called postgenomic age.

Conceptual and Ethical Considerations for Citizen Science in Biomedicine

Patients and healthy citizens are taking part in biomedical research in unprecedented numbers and ways. While the lion’s share of participation occurs in a ‘traditional’ manner where individuals volunteer to be researched, people without professional training are also increasingly contributing to scientific knowledge production as so-called citizen scientists. In many projects, lay participants share decision-making power with professional researchers, jointly setting the research agenda, planing the study, acquiring funding, and selecting the methodology. In some instances projects are led exclusively by ‘lay’ people who carry out data collection and analyses, and disseminate the results. Despite their diversity, all of these practices are often subsumed under the label of ‘citizen science’. While enthusiasm for citizen science is growing, substantive ethical and political analyses of this phenomenon are still scarce. Differentiating among citizen science initiatives according to the main type of task that citizen scientists are expected to contribute, we provide a taxonomy to distinguish between different strands of participatory practices. As citizen science of medicine continues to develop, we predict that self-policing practices of stakeholders are likely to play an increasingly important role. We close by discussing emerging ethical considerations around these initiatives.

Opening the black box of participation in medicine and healthcare (ITA manu:script 16-01)

This paper unpacks the notion of public and patient “participation” in medicine and healthcare. It does so by reviewing a series of papers published in the British Medical Journal, and by discussing these in the light of scholarship on participation in political and social theory. We find that appeals to public participation in this series are based on a diverse, potentially contradictory, set of values and motivations. We argue that if these diverse values and motivations are not carefully distinguished, appeals to participation can be an impediment, rather than an enhancement, to greater transparency and public accountability of health research.

Solidarity. Reflections on an Emerging Concept in Bioethics. Summary

1. References to solidarity are currently on the increase in public discourse. In the UK and beyond, during economic crises and in a political climate where many feel that mutual assistance has lost currency, calls for a new and forceful emphasis on the meaning of solidarity are increasingly heard. Such appeals to solidarity are inevitably linked to ideas about how societies function, and about how and where the boundary between individual, familial, communal and societal spheres of responsibilities should be drawn.