The Council’s Working Party on biological and health data held its seventh meeting on 5 March. The purpose of this meeting was to evaluate the evidence gathering process so far and begin discussion about the drafting of a report.
A public consultation for this project ran from 17 October until 10 January. Around 50 responses were received from a range of people, including academics, biomedical researchers, NGOs and regulatory bodies. The Working Party commended the responses as being thoughtful and informative.
In addition to the public consultation, the Council has commissioned two external reviews. The first will consider the evidence relating to the relationship between the private and public sector in the field of human genomics. The Council has also commissioned, jointly with Expert Advisory Group on Data Access (EAGDA), a review of evidence relating to harms resulting from security breaches or infringements of privacy involving sensitive personal biomedical and health data. This review will look symmetrically at the harms of misusing data and of failing to use data appropriately, and will feed into the continuing work of both the Council’s Working Party and EAGDA. Both commissioned reports will be publicly available in due course.
The Working Party also discussed the approach that it will take to the ethical questions addressed in its final report.
At its next meeting, the Working Party will continue its work on a draft report. The final report is expected to be published in late 2014.