Returning individual-specific results of a dementia prevalence study: insights from prospective participants living in Switzerland.

ABSTRACT

OBJECTIVES: To explore prospective participants' preferences regarding the return of their individual-specific results from a dementia prevalence study (a probabilistic diagnosis of dementia). METHODS/DESIGN: We conducted a qualitative study with 22 individuals aged 45 to 86 and resident in the Canton of Ticino (Switzerland). Participants had previously joined the validation phase of an epidemiological study into dementia and its impact. RESULTS: We found that individuals welcome the return of their individual-specific results, provided these meet a number of validity, clinical, and personal utility criteria. They justify researchers' duty to return study findings with the principles of beneficence (eg, providing information that can help participants' medical decision-making) and justice (eg, acknowledging participants' efforts to help research by sharing their personal information). Furthermore, individuals anticipate societal benefits of the return of individual specific study findings, including improved interpersonal relationships among individuals and decreased dementia-related stigma. CONCLUSIONS: Our findings suggest that researchers should address the return of individual-specific study results early on during study design and involve prospective participants in identifying both the conditions under which results should be offered and the perceived individual and societal benefits returning can have.