05 December 2011
Professor Prainsack is professor of sociology and politics of bioscience and deputy director, Centre for Biomedicine and Society (CBAS) at Brunel University. Dr Buyx is assistant director of the Nuffield Council on Bioethics.Appeared in BioNews 636
All involve people who are showing solidarity with others, or they embody solidaristic arrangements.
Our newly published report 'Solidarity: reflections on an emerging concept in bioethics' (1) takes as its point of departure an analysis of the uses of the term 'solidarity' in recent bioethical literature. Despite the fact that appeals to solidarity have increased over the last decade, explicit mentions are still relatively rare. There are also a number of definitions around, and some use solidarity synonymously with, for example, reciprocity, altruism or charity. Not infrequently, solidarity is employed as a catchphrase in order to advance an argument without further explanation of what solidarity signifies in practice. And some authors criticise it because in their view, solidarity always presupposes some shared idea of the good life and is therefore vague at best and anti-individualistic at worst.
We disagree with this latter view. In our report, we introduce a new understanding of solidarity with the aim of adding clarity and helping to unlock some entrenched discussions in bioethics, bioscience, and medicine. At the interpersonal level, solidarity, in our report, is defined as:
'Manifestations of people's willingness to incur 'costs' (understood as emotional investments, time, and sometimes also money) in order to assist others'.
This type of interpersonal solidarity (which we have named 'tier 1' solidarity) rests on a perception of sameness in a relevant sense with others – a common interest or cause, or a shared risk. It can solidify into group practices and other, more widely shared societal practices such as self-help groups (tier 2), and even, on the highest level of institutionalisation, into legal and contractual norms such as welfare arrangements (tier 3).
In our understanding, solidarity presupposes a symmetric relationship between people (as opposed to, for example, charity, where the stronger/more resourceful give to the weaker/less resourceful). Furthermore, it needs to be enacted; merely feeling solidarity with a person or a group, without acting on it at all, is not enough to satisfy our definition.
In our report we apply this understanding to a number of case studies, including research biobanks.
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. However, a number of issues in biobank governance are still contested. For example, traditional ideas and practices of informed consent are increasingly being challenged, and the heavy administrative, logistical and financial burden incurred by current (re-)consenting and re-contacting requirements have been criticised as unduly impeding research.
We believe some of these issues can be addressed by applying our understanding of solidarity. Our suggestions rest on the assumption that people are regularly willing to accept costs (the risk of harm, and the inconvenience of participation) to assist others based on the perception of sameness.
We therefore recommend a solidarity-based approach to research biobanks that entails several elements: (a) priority in the research biobanks for health research over profit; (b) the introduction of a participation agreement that is guided by openness (also about the things that researchers do not know in advance, such as new questions emerging from the biobank-based research); (c) solidarity-informed perspectives on (re-)consenting and communicating findings to participants; and (d) in instances where risks to participants are generally low, a conceptual shift from risk prevention towards harm mitigation strategies.
New research on existing samples and data in biobanks would be unaffected by this model, which would apply only to new participants signing up to a biobank.
This approach would require a number of specific changes to governance:
(a) Research biobanks employing this solidarity-based model would have to make it very clear to prospective participants what the public benefits of their research are likely to be. Research goals – and therefore the specific use of data – might change, but the overall goals in terms of public benefits should be maintained over the course of the lifespan of such a biobank. Furthermore, governance structures should be put in place that ensure that research serving pressing health needs is prioritised over research aiming to generate surplus value.
(b) With regards to recruitment, participants would sign a participation agreement which would not be focused on specific informed consent, but be guided by openness. Participants would be informed in detail about the mission of a particular research biobank, its funding and governance structures, and what it hoped to achieve. The initial disclosure would also have to include an explanation that research objectives might change and data may be used to serve research that cannot yet be envisaged, and that appropriate research ethics approval will be obtained wherever laws and regulations require this. The disclosure statement would also have to include a list of risks and benefits insofar as they can currently be foreseen, with an explicit note that this list may not be exhaustive.
(c) As for re-contacting and communicating of results, for solidarity-based research biobanks it would be acceptable to consider costs of re-contacting participants and to refrain from contacting individuals about information that has no direct and apparent individual clinical utility. Participants interested in seeing data and information generated by the biobank at the aggregative level should be able to do so via online platforms or other repositories.
(d) Finally, in order to enable cost-effective and non-bureaucratic mitigation of harm, if it occurs, solidarity-based research biobanks should establish dedicated funds for compensation of individuals affected by harm (such as demonstrable cases of discrimination by employers or insurance companies).
We believe that this solidarity-based model of research biobanks could aid in the resolution of a number of contentious governance issues while at the same time supporting the general idea of research biobanks for public interest.
Acknowledgment and disclaimer: The work on the report was commissioned by the Nuffield Council on Bioethics and funded by the Nuffield Foundation and the Arts and Humanities Research Council. The opinions expressed here are those of the authors and not necessarily those of the funders.