Reporting Individual-Level Research Results from Neurocognitive and Psychological Research in People Living with HIV: Lessons from Dementia Research.

Abstract

There are growing expectations for the return of individual-level research results (RoR), which promotes autonomy and potential clinical and personal benefits. There are ethical and practical challenges, however, that may be exacerbated in research that assesses neurocognitive and psychological outcomes, including HIV-associated neurocognitive disorder (HAND). This paper reviews central concepts for RoR and recent empirical and conceptual articles from Alzheimer's disorder (AD) as a model for HIV. Data from AD studies indicate high participant interest and low risk of harm from RoR, though additional research is needed. Investigators report a range of benefits, potential risks, and feasibility concerns. Standardized, evidence-based approaches are needed for RoR. For HIV research, we recommend a default position of offering RoR for cognitive and psychological outcomes. Investigators should justify decisions not to return results after assessing the potential value and feasibility of RoR. Longitudinal research is needed for feasible and evidence-based best practices.