How should researchers, public services and entrepreneurs make use of the ever increasing volume and variety of biomedical data now being collected? What implications do such uses have for the privacy of individuals?

The Nuffield Council on Bioethics has today launched a consultation to seek people’s views on the ethical issues that arise in relation to the linking, analysis and use of biological and health data.

The collection of unprecedented quantities of data and the development of extraordinary capacities to analyse them are presenting new opportunities in biomedical research. Advances in areas such as genomic sequencing and body imaging, digital information systems and ‘big data’ are enabling initiatives such as the Government’s 100K Genome Project which will link individual genome sequences with health records. Meanwhile, vast amounts of biomedical information are also accumulating through routine medical care, health monitoring, social media, and other on- and offline activities.

Professor Martin Richards, Emeritus Professor of Family Research at the University of Cambridge and chair of the Nuffield inquiry, said: “We hear a lot today about ‘big data’ and how it will revolutionise knowledge discovery, but we also live in a highly monitored world, where government agencies and others silently survey the interactions of citizens. We are interested in understanding more about the possible harms and benefits of new developments in data linking and use, and furthermore what might be appropriate governance and legal measures to protect people’s privacy whilst enabling legitimate research that may benefit many”.

The Council is looking into the possible implications and unintended consequences of the many ways in which data may be linked and analysed together in pursuit of better understanding of human biology and health. It is also interested in understanding how norms of privacy apply and evolve in relation to these developments, and what role the concept of the public interest might have in governing the extraction of knowledge and value from the available data.

“We are very interested in what expectations people should have about their privacy and anonymity in a world awash with data of all kinds. Should people be able to specify exactly how they want their data to be used and when they should be ‘forgotten’ by others? Should they be able to own and profit from the use of data ‘about’ them?” added Professor Richards.

The responses to this consultation will inform the Council’s inquiry into the ethical issues surrounding the use of biological and health data. The inquiry is led by a Working Party that includes people with expertise in healthcare IT, information governance, health research, clinical practice, ethics and law. The Working Party will be gathering evidence and views from a wide range of people and organisations before publishing their findings in a report in 2014.

The deadline for responses to the consultation is 10 January 2014.

Download the consultation paper

Find out more about the Council's project 'The collection, linking, use and exploitation of biological and health data: ethical issues'