Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers

Abstract

Abstract Introduction This study describes practices for disclosing individual research results to participants in Alzheimer's disease research. Methods An online survey of clinical core leaders at National Institutes of Health‐funded Alzheimer's Disease Research Centers in the United States (response rate: 30/31, 97%) examined return of results practices across nine different types of research results. Results Most centers had returned consensus research diagnoses (83%) and neuropsychological test results (73%), with fewer having shared amyloid positron emission tomography (43%), tau imaging (10%), or apolipoprotein E (APOE) genotype (7%) results. Centers reported having disclosed a mean of 3.1 types of results (standard deviation = 2.1; range 0–8). The most commonly cited reason for disclosure was to inform participants’ medical decision‐making (88%). Disclosure involved multiple professionals and modalities, with neurologists (87%) and in‐person visits (85%) most commonplace. Discussion Centers varied widely as to whether and how they disclosed research results. Diagnostic and cognitive test results were more commonly returned than genetic or biomarker results.

Keywords

• biomarkers
• genetic testing
• research ethics
• return of research results
• risk communication