Cognitive Liberty and the Return of Individual Research Results from Observational Neurodegeneration Studies: A Narrative Review

Returning individual research results (IRR) from observational brain studies confronts stakeholders – investigators, participants, families, clinicians, regulators, sponsors – with conflicting ethical, legal, and social considerations. The mismatch between stakeholder standards and expectations leaves investigators uncertain about whether and how to return IRR. We propose to clarify matters by exploring what cognitive liberty, a value salient in neuroscience, portends for the return of IRR from observational neurodegeneration research. IRR specialists have not yet connected cognitive liberty with the return of data from observational studies, despite its similarity to autonomy, a prominent value in this literature. To make this connection, we completed a narrative literature review to inventory the different conceptions of cognitive liberty and assessed their relevance for returning IRR from observational studies of neurodegeneration, with a focus on amyloid-beta imaging results in Alzheimer’s disease. A title/abstract search of PubMed and Web of Science for “cognitive liberty” and a supplementary search returned 16 search results that articulated at least one conception of cognitive liberty, for a total of 32 distinct conceptions. We explored their relevance to returning IRR in two ways. First, we evaluated two of four core conceptions and found that cognitive liberty offers little new explanatory value about why IRR should be returned. Second, we examined two peripheral conceptions – mental integrity and informational self-determination – and judged the latter a defeasible reason to posit investigator duties or participant claims to return amyloid-beta results. Overall, depending on the precise conception, cognitive liberty motivates different stances towards returning amyloid-beta imaging and other IRR.