DFG-Emmy Noether Group
"POLITICAL PHILOSOPHY AND BIOETHICS"
Political philosophy has informed bioethical debates for several decades, for example in the discussions about the just allocation of health care resources or about the normative foundations of public health. This has sometimes happened implicitly and there is a lack of systematic analysis of how concepts and theories of political philosophy have been used to build arguments for particular policy applications in bioethics, and whether this has happened in a consistent way.
The Emmy Noether Research Groups looks across a number of issues and discussions in bioethics and examines how political philosophy has played out in these areas. Based on this horizontal analysis, it seeks to develop well-argued policy proposals for ongoing bioethical debates. Exemplary fields of inquiry are theories of justice and priority setting in medicine and health care; the different normative justifications of public health and health promotion policies; and solidarity in contemporary bioethical applications.
Jasper Littmann, PhD MPH is a senior research fellow at the Division of Biomedical Ethics. He works at the intersection between ethics and public health policy, with a particular focus on the moral implications of infectious disease control and the fair distribution of health care resources. Jasper's current research in the Emmy Noether Group focuses on antimicrobial resistance and the development of appropriate policies to address this challenge. He also works on issues relating to the prioritisation of health care, vaccination campaigns, pandemic planning and risk assessment in public policy.
Jasper holds a PhD from University College London and a Master in Public Health from the Humboldt University in Berlin.
Peter West-Oram, PhD is a senior research fellow at the Division of Biomedical Ethics. He works on questions in the fields of global health care justice and public health ethics. Issues of particular interest relate to the relationship between poverty and deprivations of health, and the extent of entitlements to health care services. Peter’s current research in the Emmy Noether Research Group focuses on the extent of rights to conscientious objection in health care. This forms part of a larger project to define the nature and extent of ‘reasonable’ duties to other persons in the health care context, and which examines the potential for conflict between competing rights claims.
Peter holds a PhD in Philosophy from the University of Birmingham.
BMBF-Project “Social, ethical and regulatory aspects of ‘citizen science’ in biomedicine and bioscience”
Cooperation with the Department of Social Science, Health, and Medicine, King’s College London
Funder: German Federal Ministry of Education and Research (BMBF)
People: Prof. Barbara Prainsack, King’s College; Dr. Lorenzo Del Savio, Kiel University/King’s College, Prof. Alena Buyx, Kiel University
Science has always taken place inside and outside the boundaries of established scientific institutions. While some forms of ‘citizen science’ (CS) date back to amateur natural history in the 18th and 19th century, opening up the practice of science to wider ranges of people is a result of deep-seated socio-technical changes. Online platforms in particular have facilitated the sharing of information, expertise, and tasks. The production of a wealth of personal data -- e.g. with mobile devices and wearables -- is increasingly seen as a strategic asset for research, especially in the life and health sciences. Countercultures and the Open Science movement are challenging the current organization of science and what are often perceived as its ‘elitist’ practices and modes of funding. There is also experimentation with new legal arrangements regarding intellectual property, patents, and the access to knowledge. Due to the long tradition of patient activism, and due to currently emerging ‘big data’-approaches in biomedicine and the health sciences, CS is seen by many as potentially very helpful in these fields. Data and sample collection, the surveillance of epidemics, and even the design of clinical trials and analyses are being devolved to patients and the ‘crowd’.
Early literature on public participation in science focused on the
educational opportunities of citizens’ engagement and on democratic concerns
regarding the responsiveness of science to the needs, preferences and values of
citizens. Within the theoretical parts of the project, we will build on this
literature; mapping how CS overlaps with other emerging phenomena and concepts
such as lifetracking, patient self-care, etc. We will look at underlying social
and technological developments and trends, and examine how CS is sometimes expected
to produce better knowledge than ‘traditional’ science, how ‘better’ is
defined in the first place, and what such debates can tell us about shifting
understandings of ‘traditional’ and ‘emerging’ forms of science.
As part of the more empirical parts of the project, we will investigate
the structure, focus, and impact of CS initiatives in biomedicine and society
and analyse the various forms of citizens’ involvement with scientific
practice, using a case study approach. Aspects to consider will include the
degree of agency, participation and control that ‘citizen scientists’ have in
research planning and design, the production and evaluation of scientific
results, and the public and commercial use of the knowledge they contribute to
produce. Based on both our findings and our theoretical analysis, we will then discuss ethical and regulatory implications of the emerging
field of CS in biomedicine and health science.
Lorenzo Del Savio, PHD is a senior research fellow at the Division of Biomedical Ethics. He works at the intersection of ethics, sociology, and health and research policy. His current work focuses on citizen science initiatives in health care and the life sciences, from both an empirical and a normative perspective. His research interests include moral and political theory, public health ethics and science & technology studies.
Lorenzo holds a PhD from "Università di Milano".
Long term collaborative project, funded by various institutions „Solidarity in Bioethics and Beyond“
Together with her long term collaborator from the social sciences, Prof. Barbara Prainsack of King’s College, Alena Buyx has been working on the concept of solidarity since early 2011, when she was still Assistant Director of the UK’s de facto national ethics council (Nuffield Council on Bioethics, London). Late in that year, Prainsack and Buyx published a report of a joint project, commissioned by the Nuffield Council, on the role solidarity played in recent bioethics writing (more information on both the project and the report available here: http://nuffieldbioethics.org/project/solidarity/). In the course of the project, Prainsack and Buyx developed a working definition of solidarity that they applied to a number of case studies from the field of biomedicine and health care.
The report was well received in the field of bioethics and related disciplines. Prainsack and Buyx have presented their work on numerous occasions, organised a conference on the topic funded by the Swiss Brocher Foundation (http://brocher.ch/en/events/57/solidarity-towards-new-solutions-in-the-bioethics-of-biobanking-biosecurity-and-health-inequalities/), and published several journal articles. A German translation of the report is forthcoming. Prainsack and Buyx have continued to refine their approach and to explore new applications (part of Buyx’s work in her research group funded by the Deutsche Forschungsgemeinschaft). They have recently been offered a contract by Cambridge University Press to write a monograph on ‚Solidarity in Bioethics and Beyond’, which will continue and expand their work on how solidarity can inform both theoretical debates on thorny bioethical issues as well as provide guidance for practical policy making. In this book, they aim to further broaden their scope and include a discussion of the sources, definitions, understandings and applications of solidarity from neighbouring fields, including philosophy and the social sciences.