What do research biobanks, Twitter and the NHS have in common? All involve people who are showing solidarity with others. And thinking about how solidarity plays a role in our society can offer solutions to policy making, concludes a new report published today. For example, Twitter and other social media could be used more systematically to track the spread of disease and share information during flu pandemics. And participation agreements for research biobanks should be revised to make biobanks more efficient in working towards improving health.
The report, Solidarity: reflections on an emerging concept in bioethics, was commissioned by the Nuffield Council on Bioethics and funded by the Nuffield Foundation and the Arts and Humanities Research Council.
Professor Barbara Prainsack of Brunel University, one of the two authors of the report, said: “We define solidarity as people’s willingness to help others even if this incurs ‘costs’ for them, such as time, emotional investment and, in some cases, money. Solidarity can take place between just two individuals, but it can also be a more widely shared societal practice.”
The report uses this new understanding of solidarity to help find solutions in three areas of policy-making: biobanks, pandemics and lifestyle diseases.
Large scale collections of biological samples and data, along with information such as the individual’s health or lifestyle, have become invaluable tools for research on a wide range of diseases. In the past, ethicists have voiced concerns about the potential for privacy violations, and emphasised the need for participants to be re-contacted to obtain consent for new research projects involving their sample or data. The report takes a radical new approach to organising people’s participation in biobank-based research, suggesting that ‘participation agreements’ should replace traditional consenting procedures.
“In the spirit of solidarity, we believe that it is acceptable to ask participants to agree to their sample being used in any future research that is within the broad aims of the biobank and has been approved by a research ethics committee. The risks to the participant are very low yet it would save valuable time and resources for the biobank,” says Professor Prainsack.
The swine flu pandemic in 2009 caused 18,000 deaths around the world and led to airport and school closures, border screening, and state vaccination programmes targeted at vulnerable people.
“It is increasingly common for people to use social media such as Twitter and Facebook in times of crisis to help others – by circulating information, organising assistance or simply giving someone a voice,” said Professor Prainsack. “We believe that this new expression of solidarity has not been fully explored by state authorities. In future, social media could be used more systematically during pandemics, for example, to track the spread of disease, raise awareness of public health measures, collect information, and organise assistance.”
Some argue that people with so-called ‘lifestyle’ diseases, such as obesity, type II diabetes and some types of cancer, have inflicted these on themselves and therefore should not have the same access to publicly-funded healthcare services as people leading ‘healthy lives’. This argument assumes that people suffering from these conditions or diseases have not shown solidarity with people who do take care to live a healthy life.
However, Professor Prainsack said: “It is very difficult to determine a causal link between behaviour and illness on an individual level, as most lifestyle-related diseases are caused by multiple factors, including social and environmental ones. We argue that a solidarity-based approach would instead support access to healthcare granted on the basis of need, as is currently the case in the UK’s NHS.”
Notes to editors
1 To arrange an interview or for further information:
Nuffield Council on Bioethics
28 Bedford Square, London WC1B 3JS
Phone: +44 (0)20 7681 9619
Mob: +44 (0)7747 635863
Professor Barbara Prainsack will be available for advance interview on Tuesday 29 November.
2 The report
The report will be available to download from the Council’s website www.nuffieldbioethics.org/solidarity from Wednesday 30 November 00:01. To request an advance copy, please contact Catherine Joynson (see above).
3 Funding and authorship
This report was commissioned by the Nuffield Council on Bioethics (NCoB) and was jointly funded by the Arts and Humanities Research Council (AHRC) and the Nuffield Foundation. The award was managed by the Economic and Social Research Council (ESRC) on behalf of the partner organisations, and some additional funding was made available by NCoB. For the duration of six months in 2011, Professor Barbara Prainsack was the NCoB Solidarity Fellow, working closely with fellow author Dr Alena Buyx, Assistant Director of NCoB.
The report, whilst funded jointly by the AHRC, the Nuffield Foundation and NCoB, does not necessarily express the views and opinions of these organisations; all views expressed are those of the authors, Professor Barbara Prainsack and Dr Alena Buyx.
Barbara is Professor of Sociology and Politics of Bioscience, and Deputy Director, Centre for Biomedicine & Society (CBAS), at Brunel University.
Nuffield Council on Bioethics
The Nuffield Council on Bioethics is an independent body that examines and reports on ethical issues in biology and medicine. It is funded jointly by the Nuffield Foundation, the Wellcome Trust and the Medical Research Council, and has gained an international reputation for advising policy makers and stimulating debate in bioethics.
The Nuffield Foundation is an endowed charitable trust that aims to improve social wellbeing in the widest sense. It funds research and innovation in education and social policy and also works to build capacity in education, science and social science research.
Arts and Humanities Research Council
Each year the AHRC provides approximately £100 million from the UK Government to support research and postgraduate study in the arts and humanities, from languages and law, archaeology and English literature to design and creative and performing arts. In any one year, the AHRC makes hundreds of research awards ranging from individual fellowships to major collaborative projects as well as over 1,000 studentship awards. Awards are made after a rigorous peer review process, to ensure that only applications of the highest quality are funded. The quality and range of research supported by this investment of public funds not only provides social and cultural benefits but also contributes to the economic success of the UK. www.ahrc.ac.uk
4 Launch event
The report will be discussed at a public launch event in London on Wednesday 30 November 2011, 16:30-18:00. Speakers will include Barbara Prainsack, Alena Buyx, Nikolas Rose and Claire Fox. Further details are available at: www.nuffieldbioethics.org/about/events/
The findings of the report were developed following two main activities. First, between February and May 2011, a systematic literature study was carried out to analyse the use of the term ‘solidarity’ in recent and older publications. Secondly, insights were obtained from two workshops held in spring and summer 2011. The first involved a number of experts who took part in a roundtable discussion of common uses of solidarity in bioethics and the first draft of the authors’ working definition of solidarity. The second workshop served to refine the working definition and to discuss drafts of the three case studies.