During your research, you may uncover health information about research subjects that was previously unknown, for example, discovery of a tumour, or a cancer-related gene. These may or may not be significant, or may have unknown significance.
Scientific and medical judgement should be used to weigh the risks and benefits of alerting / alarming individual subjects to these findings.
When obtaining consent, you should inform subjects whether or not they will receive the results of any tests, and whether there will be any provisions for further follow-up or treatment if these tests revealed abnormal findings.
Where a health finding also has implications on other people (e.g. genetic information that relates to a subject’s family), you should decide whether there is an obligation to inform them as well as the subjects. (13,14)
Refer to the following documents for more guidance:
- Framework on the feedback of health-related findings in research (MRC and wellcome Trust, 2014) (includes case studies)
- Management of incidental findings detected during research imaging (RCR, 2011)
End of module: Key messages and self-assessment →
MRC, Wellcome trust. Framework on the feedback of health-related findings in research [Internet]. Wellcome trust; 2014. Available from: https://wellcome.ac.uk/sites/default/files/wtp056059.pdf
RCR, SINAPSE, Wellcome trust. Management of Incidental Findings Detected During Research Imaging [Internet]. The Royal College of Radiologists; 2011 [cited 2019 Feb 7]. Report No.: BFCR(11)8. Available from: https://www.rcr.ac.uk/publication/management-incidental-findings-detected-during-research-imaging