A Policy Framework For Anticipatory Neuroethics and Diverse Engagement Concerning CRISPR and Cognitive Conditions

Please join the OEC in hosting Michael Nestor, Board Director for the Government-University-Industry Research Roundtable at the National Academies of Sciences, Engineering, and Medicine as he speaks on how Scientists must continue innovating to improve and increase the deployment of Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) technologies. However, if diverse stakeholder engagement and participation from the non-scientific community are not achieved in the development of this technology, the scientific community risks losing the public trust. 

Using CRISPR to edit genes that underlie human cognitive attributes represents a unique ethical challenge at the interface between the scientific community and the lay public. CRISPR is urgently needed to develop impactful therapeutic interventions for disease. Although this is the case, the disease treatment category has an outsized impact. For example, using CRISPR to alter the expression of genes that affect cognition to treat cognitive conditions like depression or schizophrenia carries a phenomenological burden that editing genes to treat cancer, for example, may not. This is because these genes occupy a special class, namely those that can change the nature of the lived experience by changing the definition of personhood for all stakeholders. As CRISPR technology is adopted to treat human cognitive diseases (cogCRISPR) it has the potential to redefine the nature of personhood because of the intimate relationship between human cognitive states and the delineation of the self. 

Due to the potential importance of cogCRISPR in the lived experience of future stakeholders, an anticipatory ethical and policy framework is needed to drive discussion and debate with the most diverse set of stakeholders possible. This framework must engage diverse stakeholders representing the lay public, scientists, and private and government institutions concerning using CRISPR therapeutics to alter cognitive and other mental traits. The system proposed here is called the CRISPR-cognition genes database (CCGD). This anticipatory ethical framework is built on a peer-to-peer review system. The CCGD is a dynamically updated system of genes pulled from studies in the scientific literature and validated by a scientific and non-scientific review board. 

The database additions and subtractions are subject to public peer review and discussion gathered from diverse stakeholders to provide feedback into the review process. The CCGD would engage the public with private and government institutions in a process to provide oversight on what genes are altered using CRISPR concerning cognitive states. It would also provide a starting point for diverse stakeholder engagement in using this disruptive technology to treat neurological conditions and build trust as CRISPR is increasingly integrated into therapeutics across the biomedical space.

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About Michael Nestor:

Dr. Michael W. Nestor is the Board Director for the Government-University-Industry Research Roundtable at the National Academies of Sciences, Engineering, and Medicine. Dr. Nestor came to the Academies from Johnson & Johnson – Innovation, JLABS, where he helped to drive the development of programs and initiatives to commercialize early-stage companies involved in innovative and translational biotechnology across the global health enterprise at J&J. 

Before J&J, Michael was Director of Neural Stem Cell Research at The Hussman Institute for Autism, where he led his own laboratory studying autism by creating brain organoids from human induced pluripotent stem cells. His lab developed and pioneered a brain organoid model and developed novel multiplexed high-throughput CRISPR and drug-screening platforms, which he spun out into the companies Synapstem and, more recently, Autica Bio, where he now serves as the Chief Scientific Officer. 

Michael was a venture advisor to the UM Momentum Fund and an Early Career Policy Ambassador for The Society for Neuroscience. He served as an AAAS Science and Policy Technology Fellow in the Office of Science, Department of Energy, where he focused on crosscutting synthetic biology, artificial intelligence, and biosecurity initiatives. Dr. Nestor recently authored the book “Anticipatory Ethics and The Use of CRISPR in Humans” published by Springer/Nature. This book constitutes the first anticipatory governance and policy framework for regulating the use of CRISPR to edit genes involved in human cognition. 

Dr. Nestor received his Ph.D. in Neuroscience from The University of Maryland School of Medicine and completed postdoctoral fellowships at the National Institutes of Health, Rutgers University as an NIH IRACDA Fellow, and at The New York Stem Cell Foundation, where he was also a Staff Scientist.