Article Reporting on Survey of Alzheimer’s Disease Research Centers Published

An article was recently published in Alzheimer’s & Dementia: Translational Research & Clinical Interventions which describes the results of an online survey of clinical core leaders at National Institutes of Health-funded Alzheimer’s Disease Research Centers in the United States. The survey examined how individual centers within this national network are addressing a range of issues related to return of research results in their own longitudinal cohort studies. The findings indicate that many Alzheimer’s Disease Research Centers are disclosing a range of individual research results to their participants, with diagnostic and neuropsychological assessment findings more commonly returned than genetic or biomarker results. There was considerable variability across centers regarding return of results, including types of results disclosed, professionals involved in results disclosure, and practices used when returning results. The full article can be accessed below.

Roberts JS, Ferber R, Blacker D, Rumbaugh M, Grill J, for the Advisory Group on Risk Evidence Education for Dementia (AGREED) (2021). Disclosure of individual research results at federally funded Alzheimer’s Disease Research Centers. Alzheimer’s & Dementia: Translational Research & Clinical Interventions, 7:e12213.

Ethical, Legal, Social, and Policy Implications of Workplace Genomic Testing Project Funded by NHGRI

Researchers from the University of Michigan School of Public Health and the Jackson Laboratory for Genomic Medicine will lead an interdisciplinary, multi-institution study of the ethical, legal and social implications of workplace genomic testing in the United States. Here is an article in the University of Michigan’s School of Public Health newsletter with more information about the project. Scott Roberts is a Co-Principle Investigator and Wendy Uhlmann is a Co-Investigator on the project.