PhD Student Arizona State University, United States
Neurogenetics is an emerging field that leverages digital sequence information derived from human genomes to improve our understanding of neurological and neurodevelopmental conditions. However, conversations and policies related to ethical use of neurogenetic data, especially as it relates to Indigenous peoples and communities, are incredibly nascent. Given the severe cultural and ethical concerns that are specific to neurological data, more conscious attention and emphasis on research praxes and protocols are needed, especially as the increasing amounts of information are collected from Indigenous peoples outside of community-level governance and jurisdictions, to include urban-based specialty health centers and academic research institutions off Tribal lands. If Indigenous peoples are to be a target for inclusion in neurogenetics basic and clinical research into ever-growing datasets, then the fields must recognize and operationalize Indigenous data sovereignty principles at multiple intervention points (e.g. data collection, data analyses, data storage, and brain- or biobanking) to prevent recapitulating harms in this new big data field. Here, we focus on the unique risks and concerns as it relates to: neurogenetic data to include reference genomes and biological genetic race reification, proximal benefit sharing and data equity, suggestions for standard operating procedures as implemented by global Indigenous groups, and disability and access-to-care considerations for Indigenous individuals and community members. We consider this a sentinel and signal for researchers, clinicians, and institutions to bolster their attention to these emerging issues.
