Roundtable: Disclosing Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals

The current consensus on sharing biomarker-based assessments of Alzheimer’s Disease (AD) to cognitively healthy individuals is that risk/biomarker/genetics results should not be communicated to asymptomatic, cognitively healthy individuals. It is argued that disclosing risk status in the absence of preventative and, or therapeutic options can lead to psychosocial harms, fuelled by uncertainty and dementia anxiety. Furthermore, disclosing research risk information may lead to over-investigation, misdiagnosis and over-treatment of age-related cognitive change. The foregoing harms-benefit analysis is based on an interpretation of several underlying bioethics principles, such respect for persons, beneficence, and justice. However, in a changing ethical landscape of biomedical research and participant autonomy, these principles can be used to argue both for and against the sharing of dementia biomarker research results. In this salon, we will discuss these conundrums, as well as pragmatic considerations regarding sharing of research results with study participants.

Facilitator

Lorina Naci, Associate Professor of Psychology, Trinity College Dublin and Global Brain Health Institute (GBHI) Faculty   

Confirmed Panelists

Mackenzie Graham, PhD
Senior Research Fellow in Imaging and Data Ethics, Wellcome Centre for Ethics and Humanities
University of Oxford

Elena Tsoy, PhD
Assistant Professor, UCSF Memory and Aging Center

Emily Largent, JD, PhD, RN
Emanuel & Robert Hart Assistant Professor of Medical Ethics and Health Policy, Perelman School of Medicine
Senior Fellow, Leonard Davis Institute of Health Economics
University of Pennsylvania

Brian Lawlor, MD, FRCPI, FRCPsych,FTCD (Hon), DABPN
Deputy Executive Director, Global Brain Health Institute

Bruce Miller, MD
A.W. and Mary Margaret Clausen Distinguished Professor in Neurology Director, UCSF Memory and Aging Center
Co-Director, Global Brain Health Institute

Francesca Farina, PhD
Research Assistant Professor, Department of Medical Social Sciences
Atlantic Fellow for Equity in Brain Health, GBHI