A collection of resources on incidental findings
Incidental findings, or unsolicited findings, are unexpected findings that emerge during research, but are beyond the aims of the study, and thus identified ‘incidentally’ or characterized as ‘unsolicited’. Considering that the findings may have consequences for health and well-being of the research participants, there are various ethical, societal, and legal aspects that need to be planned in the management of these, from anticipation to feedback to the participants. The diversity of incidental findings (e.g. genetic vs. imaging), policies and guidelines present a fragmented landscape that is difficult to navigate. In this regard, the Knowledge Bases provides the following resources.
Incidental findings place researchers before an ethical dilemma: disclosing information about incidental findings to participants may be beneficial, but it may also be harmful, and potentially unwanted. This webinar presents a 7-step framework for the responsible handling of incidental findings (BBMRI-NL).
The purpose of this guide is to provide practical support to researchers, research groups, biobanks, research institutions, and research ethics review committees, with the design or evaluation of policies on the management of incidental findings in biomedical and biobank research. The guide sets out minimum requirements based on a practical ethical framework and describes best practices for the detection, management and communication of incidental findings. (BBMRI-NL, 2017).