The collection, linking and use of data in biomedical research and health care: ethical issues


Published 03/02/2015

Front cover
Hands point to big screen with DNA sequence code
  1. 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.
  2. To identify, define and examine significant ethical questions raised by these developments.
  3. To consider, in particular, the implications (including possible benefits and possible harms) of these developments, having regard to:
    1. the meaning, importance and the practical exercise of privacy, autonomy, anonymity, identity, altruism, solidarity and citizenship;
    2. ownership, control and interest in data, and the exercise of these via measures such as consent, authorisation, donation and sale;
    3. 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;
    4. the moral and legal duties of those involved in the collection, linking, use and exploitation of data;
    5. the appeal to autonomy, rights, human dignity and common interest as justifications for processing data in different contexts.
  4. To report on these matters and to make recommendations, as appropriate, for research, information governance and policy.