Presenter: Eline Bunnik, PhD, Erasmus MC, BBMRI.nl
Moderator: Melanie Goisauf, BBMRI-ERIC
In biomedical research involving human subjects, incidental findings can be uncovered that are beyond the scope of the research but may be of relevance to the health of the research participant. 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.
There is considerable heterogeneity between research groups and biobanks within and across countries, in current practices and policies for the handling of incidental findings in research settings. In the Netherlands, we developed practical guidance for the detection, management and communication of incidental findings for the biobank community. The project was funded by BBMRI-NL and based on earlier work on ethical issues surrounding incidental findings in imaging research.
In this webinar, I will reflect on the results of two interview studies on the impact of incidental findings, detected in the brain during research imaging, on research participants’ lives, to sketch the ethical dilemma. Also, I will present a 7-step framework for the responsible handling of incidental findings. Finally, I will highlight the key recommendations of our practical guide, and point out open questions for discussion.
The recording can be found here.