What are the key international policy positions addressing the secondary use of data from deceased individuals?
Few international documents directly address the secondary use of deceased individual’s personal information. The United Nations Education, Scientific and Cultural Organization (UNESCO) and the International Bioethics Committee (IBC) recognize that the access to genetic data from deceased individuals raises interesting questions. However, many documents address the secondary use of data when it is impossible to obtain consent from the individual, for instance, when this person is deceased. For example: • The Declaration of Helsinki (World Medical Association, 2008) mentions that there may be situations in which it is unpractical, even impossible, to obtain consent, or that obtaining consent would compromise the validity of the study. In such cases, research may be undertaken only after evaluation and approval by a research ethics committee. • The International Declaration on Human Genetic Data (UNESCO, 2003), mentions that when prior consent cannot be obtained, human genetic data may b
