Meta consent: a flexible and autonomous way of obtaining informed consent for secondary research

A rapidly increasing capability for storing, linking, and analysing health data has led to new opportunities for research. However, it also raises new ethical and regulatory concerns. Central among these is the question of the conditions under which secondary research can use data that were collected as part of routine healthcare practice or for a specific research project. Does secondary use require renewed informed consent from the original participants?

New developments in data handling and analysis throw up new problems, such as whether it is possible to make patient data unidentifiable, and to what degree.1 2 If the use of identifiable data requires informed consent, we must carefully reconsider whether informed consent is robust enough to withstand the more complex ethical challenges that technology brings with it; for example, in relation to the level of privacy protection that can be offered now and in the future.3 In this paper we propose a model for resolving these tensions—“meta consent.”