Council work theme to examine genomics, health records, database linkage and privacy
The use of new technologies that greatly facilitate the collection, storing, sharing and linking of data has become increasingly important to biomedical research and healthcare, as well as to many of the conveniences of contemporary life. However, new uses of health and biological data relating to distinguishable individuals also holds potentially far-reaching implications for privacy, interpersonal relationships and the relations between individuals and society.
The Council has agreed to establish a new work theme to examine the ethical issues raised by sharing and linking health and biological data under the chairmanship of Professor Martin Richards, Emeritus Professor of Family Research at the Centre for Family Research, University of Cambridge.
Questions addressed could include:
- How do developments in the collection, storage and sharing of biological and health data, and their linking with other data sources (including social and administrative data) affect the scope of benefits, harms and uncertainties facing individuals?
- How might these developments affect the understanding of privacy in relation to biodata? What do they mean for the protection of confidentiality and anonymity or the exercise of autonomy?
- How might they affect the balance between private and public interests in biodata? What part might be played by values of altruism, trust, reciprocity and solidarity?
- What implications do they have for the governance of biodata, biobanks and data repositories?
We would like to hear from you if you have an interest in this area, whether personal, public or professional, and would like to be kept informed about or contribute to this work.
We intend to bring together a working party of people with relevant knowledge and expertise to take forward our enquiry and deliberations. We wish to identify people who can contribute to this work in any of a variety of ways, for example, through participation in the working party, by providing evidence, preparing expert reports, discussing specific issues with us, offering views, opinions and insights from personal experience, fostering public debate or putting our conclusions into practice. Hearing from people with an interest in the subject at this formative stage will help us ensure we create the best opportunities for wider input to the work and that we do not miss out potential contributors. It will also help us to frame our work so that it can best engage with and meet the needs of relevant audiences.
If you are interested in helping us with this work or would simply like to be kept informed of progress please let us know by contacting us in any of the following ways:
- Email Tom Finnegan on firstname.lastname@example.org
- Phone: +44 (0)20 7681 9619
- Post: Nuffield Council on Bioethics, 28 Bedford Square, London, WC1B 3JS
It would be helpful if you could let us know the nature of your interest in this work and in what way, if any, you might be able to contribute. (Please note that participation is unremunerated.) See our data protection statement.
As this theme of work develops, further information will be made available through: