National Institutes of Mental Health Data Archive: Privacy, Consent, and Diversity Considerations and Options for Improvement

Abstract

Data sharing is essential to further advance the field of neuropsychiatry. However, it raises significant ethical issues in the domains of privacy, consent, and diversity. We begin by considering the sensitive nature of much neuropsychiatric data. Next, we review relevant policies of the National Institutes of Mental Health (NIMH), a prominent funder in this field. Because data sharing in neuropsychiatry is in its infancy and rapidly evolving, the NIMH policies serve as a helpful starting point for examining ethical considerations related to the collection and distribution of neuropsychiatric data. However, we find gaps in their guidance in each of the three key ethical domains. Finally, we illustrate how examination of lessons and strategies from other contexts where sustained attention has already been given to these ethical issues may add value by suggesting specific opportunities for improvement. In particular, we highlight approaches including a three-tiered data access scheme, use of technology to enhance the data sharing component of the informed consent process, and evidence-based, targeted recruitment of underrepresented populations to support diverse data resources. Assessment of current policy and potentially helpful innovations in other fields is a necessary step in moving the field forward in an ethically responsible manner.