The Impact of Incidental Findings Detected During Brain Imaging on Research Participants of the Rotterdam Study: An Interview Study

This interview study investigates the short- and long-term implications of incidental findings detected through brain imaging on research participants' lives and their surroundings. For this study, nine participants of the Rotterdam Scan Study with an incidental finding were approached and interviewed. When examining research participants' narratives on the impact of the disclosure of incidental findings, the authors identified five sets of tensions with regard to motivations for and expectations of research participation, preferences regarding disclosure, short- and long-term impacts and impacts on self and others. The paper shows: (1) that the impact of incidental findings may be greater than participants at first let on; (2) incidental findings can have significant effects on participants' social environment; and (3) participants may not feel prepared for disclosure even if incidental findings have been discussed during the informed consent process. The authors call for investigators to be aware of research participants' experiences and these short- and long-term impacts when designing suitable courses of action for the detection and management of incidental findings in research settings. This study is a result of the research project "Previously healthy? An ethical approach of incidental findings through imaging studies," which was funded by ZonMW, dossier number 731010004 (2013-2015). Additional funding for this project was awarded to Eline Bunnik by the WiRe Fellowship Program at the University of Munster, Germany (2019). Bomhof, CHC (corresponding author), Erasmus MC, Dept Med Eth Philosophy & Hist Med, Rotterdam, Netherlands.