Professor Heather Widdows is the John Ferguson Professor of Global Ethics at the Department of Philosophy, University of Birmingham. Part of Widdows’ research concerns genetic ethics and governance, especially biobanking and her academic outputs in this area include a monograph, a co-edited collection and a journal special issue, and over ten single and co-authored journal articles and book chapters.
Research objectives
Through her own individual research and collaborative research (primarily on two EC funded projects (‘PropEur’ and ‘Tiss.EU’)), Professor Widdows’ has researched the ethics of biobanking (the practice of storing human biological/genetic data and samples for research). She has argued that the traditional ethical frameworks and governance procedures of medical ethics are inappropriate and ineffective for regulating biobanks. In particular she has argued that that the reliance on practices of informed consent and confidentiality for participants is problematic for many reasons. Two of these are that: first, consent is typically ‘one-off’ so cannot address the future-orientated and long-term nature of biobanks; second, consent can never meet the criteria for ‘informed’ as at the time of consent, it cannot be known what research will be undertaken using the participants samples and data. Widdows recommended that alternative frameworks should be trialed, tested, and amended as possible alternatives to informed consent. Appropriate ethics for biobanks, and for genetic data, is a focus throughout this body of work and in Widdows’ latest publication The Connected Self where she provides many more reasons for these claims.
Research processes and outputs
Professor Widdows engaged in various policy discussions, both as a single academic (for example given talks to non-academic audiences) and through her committee membership of the Ethics and Governance Council (EGC) of UK Biobank (UKB) of which she was a member from 2007 to 2013UKB is a 30-year epidemiological study (the first of its size and type) building the world’s largest information and material resource in its area and has recruited half a million UK citizens who provided samples and personal information to be stored and used for research.
Impact
The impact of this research was primarily national (on UKB itself) but ultimately international as the processes and lessons of UKB are taken up by other biobanks around the world. Through her extended 6 year term as a full member of the EGC, Widdows was able, as a member of the council, to contribute to and influence the development of ethics and governance processes and procedures. In particular Professor Widdows was particularly concerned to ensure that the public remained prominent as ethical justification and criteria (i.e. that all research using UKB data or samples must be demonstrably in the public interest and that this must be ascertained before access is granted).
Internationally, Widdows’ research has contributed to the thinking of the World Medical Association on genetic governance. In 2013 she gave one of the opening keynotes at the World Medical Association Conference which was concerned with revising the Declaration of Helsinki (the code that governs all research globally and sets ethical standards against which all researchers are judged).
In 2014 she became a member of the Nuffield Council on Bioethics and in this new role will continue to engage in influencing policy and public debate.
Learn more
If you are interested in the work that Professor Heather Widdows undertook in this area you can learn more by undertook in this area you can learn more by visiting her staff profile.
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