Have Research Ethics Committees Got It Wrong? A New Study Looks at What Participants in Medical Research Actually Want

Co-authored by Susan E. Kelly and Barbara Prainsack

Traditionally, the “gold standard” of informed consent for participation in medical research entails that participants need to consent to every new research study, which means that they need to be contacted and re-consented each time. Biomedical research today increasingly involves large international consortia of researchers using large data sets that may be physically located in dispersed locations across the globe. Seeking specific informed consent in these circumstances, particularly for each potential new use of samples or information, is challenging, expensive and often practically impossible. Some institutions thus use so-called “broad consent”, by which research participants agree to a range of future uses of their samples and data. This can be particularly helpful in situations where at the time of the initial consent, it is impossible to predict how data and samples will be used in the future. Broad consent has thus been seen as a feasible compromise between individual autonomy and practical feasibility.

But is it a compromise? A study we published in PLOS ONE suggests broad consent may be what many research participants actually prefer. The study, which surveyed over 2,300 unselected research volunteers from a UK twin cohort, found that the majority (58%) of respondents were happy for their DNA and medical information to be used without being re-contacted for additional consent if a different study was carried out on the same disease and by the same researcher. When asked if they would want to be re-consented if a different investigator was to use their DNA to conduct research on the same disease, respondents were only half as likely to give their consent without being re-contacted (31%). These findings are a strong indication that knowing who carries out the study matters to participants, and that their trust in —> Read More