Reframing the Ethics of Informing Research Participants of Modifiable Dementia Risk Factors

Abstract
Research has shown that up to 40% of dementia incidence can be accounted for by 12 modifiable lifestyle risk factors. However, the predictive value of these risks factors at an individual level remains uncertain. Ethical considerations of beneficence and non-maleficence, respect for autonomy, and justice —on which most ethical guidelines for disclosing individual research results are based— fail to provide conclusive justification for, or against, disclosing modifiable risk factors for future dementia to cognitively unimpaired research participants. We argue for a different approach to evaluating the disclosure of individual-level modifiable risk factors for Alzheimer’s disease. Rather than focussing on individual-level disease prediction and prevention, we suggest that disclosure should be evaluated based on the impact of behavioural and lifestyle changes on current brain health.