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“Returning individual research results in observational studies of neurodegeneration”

Abstract: Recent guidance on the return of individual research results does not clearly govern observational research on monogenic neurodegenerative disorders where unvalidated genomic or genetically relevant “dry” biomarker information could be returned to address participant concerns about genetic underdetermination and to foster participant self-understanding. This project defends the claim that the principles of cognitive liberty and the capability to be brain healthy may better govern the decision whether to return results than more general bioethical principles and more directly speak to the perspectives of investigators and participants. By examining these principles in the context of monogenic neurodegeneration, this project may establish more sophisticated guidance for investigators and sponsors about which results to return, what justifies return or non-return, and what additional obligations may follow.

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