The collection, linking and use of data in biomedical research and health care: ethical issues
- To identify developments in the collection, linking, use and exploitation of human biological and health data arising from advances in knowledge, technology, organisation and governance.
- To identify, define and examine significant ethical questions raised by these developments.
- To consider, in particular, the implications (including possible benefits and possible harms) of these developments, having regard to:
- the meaning, importance and the practical exercise of privacy, autonomy, anonymity, identity, altruism, solidarity and citizenship;
- ownership, control and interest in data, and the exercise of these via measures such as consent, authorisation, donation and sale;
- the interaction between the interests of the individual data subject, other individuals, the public interest and commercial interests, particularly in cases in which these are not aligned;
- the moral and legal duties of those involved in the collection, linking, use and exploitation of data;
- the appeal to autonomy, rights, human dignity and common interest as justifications for processing data in different contexts.
- To report on these matters and to make recommendations, as appropriate, for research, information governance and policy.