The Council’s report on the impact of big data technologies on privacy, public interest and how these are conceptualised was published in February 2015.
Electronic health records, genome sequencing, clinical trial data, body and brain scans, lifestyle information collected on apps and other ‘self-quantifying’ tools appear to create a tantalising variety of data promising to paint a much more complete picture of population and individual health. The opportunities this might offer for a wider evidence base and better healthcare have long been a focus in the UK’s national research strategy with a notable track-record of population studies, and later the development of UK Biobank. While our report was being written up, the 100,000 Genomes project took off, and in the healthcare sector the care.data project made headlines on an almost weekly basis.
Our report was shaped against the background of this very dynamic new field of ‘data ethics’, and we tried to outline an adequately broad horizon against which some key features of what came to be called ‘data initiatives’ in the report with their focus on re-use and data linkage can be assessed in ethical terms.
Since the launch of the report, we have talked to many others working on big data initiatives in biomedical research and healthcare, including government departments and agencies, the BMA and the Wellcome Trust amongst others, and have looked for ways of putting our recommendations into practice. The issues that are pertinent now revolve, for example, around the trustworthiness of data-holding institutions particularly as these increasingly share data with third parties, be they academic researchers, administrative bodies, or commercial companies.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.