CNT research includes:
- Focus groups with individuals with disabilities on perspectives of brain-computer interface (BCI)
- Focus groups and interviews with end users of neural devices
- Interviews with subjects with closed-loop deep brain stimulation (DBS) for essential tremor (Tim Brown) and with subjects with DBS for depression and obsessive-compulsive disorder (Eran Klein)
- Survey of BCI scientists on attitudes toward ethics and ethics engagement
- Collaboration with the Neuroethics Core at UBC
Boulicault, Marion and Tim Brown. "How Relationships Matter: The Need for Closer Attention to Relationality in Neuroethical Studies." AJOB Neuroscience (forthcoming)
Goering, Sara and Eran Klein “Embedding ethics in neural engineering: An integrated transdisciplinary collaboration.” In Philosophy for the Real World: An Introduction to Field Philosophy with Case Studies and Practical Strategies, edited by Evelyn Brister and Robert Frodeman. Routledge. (forthcoming)
Klein, Eran. “Informed consent for next generation DBS in psychiatric research: Engaging end users to understand risks and improve practice.” In Research Involving Participants with Cognitive Disabilities & Differences: Ethics, Autonomy, Inclusion, and Innovation, edited by Racine, E and Cascio, A., Oxford University Press. (forthcoming)
Goering, Sara and Eran Klein. “Neurotechnologies and Justice by, with and for Disabled People.” In Oxford Handbook of Philosophy and Disability, edited by David Wasserman and Adam Cureton, Oxford University Press, 2019.
Brown, Tim. “Mandatory Neurointerventions and the Risk of Racial Disparity.” AJOB Neuroscience 9, no. 3 (2018): 156-157, DOI: 10.1080/21507740.2018.1496183
Gilbert, Frédéric, John Noel M. Viaña, and Christian Ineichen. "Deflating the 'DBS causes personality changes' bubble." Neuroethics (2018). DOI: 10.1007/s12152-018-9373-8
Gilbert, Frédéric, Terence O'Brien, and Mark Cook. "The effects of closed-loop Brain Implants on Autonomy and Deliberation: What are the Risks of Being Kept in the Loop?" Cambridge Quarterly of Healthcare Ethics 27, no. 2 (2018): 316-325.
Gilbert, Frédéric and Paul Tubig. "Cognitive Enhancement with Brain Implants: The Burden of Abnormality." Journal of cognitive Enhancement 2, no. 4 (2018): 364–368. doi.org/10.1007/s41465-018-0105-0
Gilbert, Frédéric and John Noel M. Viaña. "A Personal narrative on living and dealing with psychiatric symptoms after DBS surgery." Narrative Inquiry in Bioethics 8, no. 1 (2018): 67-78.
Gilbert, Frédéric. "Deep Brain Stimulation: Inducing Self-Estrangement." Neuroethics 11, no. 2 (2018): 157-165. DOI: 10.1007/s12152-017-9334-7
Klein, Eran, Betts Peters, and Matt Higger. "Ethical Considerations in Ending Exploratory Brain–Computer Interface Research Studies in Locked-in Syndrome." Cambridge Quarterly of Healthcare Ethics 27, no. 4 (2018): 660-674.
Klein, Eran and A. Rubel. "Privacy and ethics in brain-computer interface research." In Brain-Computer Interfaces Handbook: Technological and Theoretical Advances, edited by Chang S. Nam, Anton Nijholt, and Fabien Lotte, 653-668. Taylor and Francis, 2018.
Martens, Hannah and Tim Brown. “Relational Autonomy and the Quantified Relationship.” AJOB 18, no. 2 (2018): 39-40. DOI: 10.1080/15265161.2017.1409835
Pham, Michelle, Sara Goering, Matthew Sample, Jane E. Huggins, and Eran Klein. “Asilomar survey: Researcher perspectives on ethical principles and guidelines for BCI research.” Brain-Computer Interfaces (2018): 1-15.
Stramondo, Joseph. “The distinction between curative and assistive technology.” Science and Engineering Ethics (2018) https://doi.org/10.1007/s11948-018-0058-9 Published Online May 1, 2018.
Viaña, John Noel M. and Frédéric Gilbert. "Deep Brain Stimulation for people with Alzheimer's disease: anticipating potential effects on the tripartie self." Dementia: International journal of social research and practice (2018). https://doi.org/10.1177/1471301218761147
Viaña, John Noel M., Adrian Carter, and Frédéric Gilbert. "Of Meatballs and Invasive Neurotechnological Trials: Additional Considerations for Complex Clinical Decisions." American Journal of Bioethics Neuroscience 9, no. 2 (2018): 100-104.
Viaña, John Noel M. and Frédéric Gilbert. "32 Shades of Neuroethics - A Review of The Routledge Handbook of Neuroethics edited by Johnson and Rommelfanger." American Journal of Bioethics 18, no. 10 (2018): W1-W3.
Brown, Tim and Margaret Thompson. "When Neuroethicists Become Labmates." The Neuroethics Blog (2017). Retrieved on January 16, 2018, from http://www.theneuroethicsblog.com/2017/02/when-neuroethicists-become-labmates.html
Gilbert, Frédéric, Mark Cook, Terence O'Brien, and Judy Illes. “Embodiment and Estrangement: Results from a First-in-Human 'Intelligent Brain Computer Interface' Trial.” Science and Engineering Ethics (2017). DOI 10.1007/s11948-017-0001-5
Gilbert, Frédéric, Eliza Goddard, John Noel M. Viaña, Adrian Carter, and Malcolm Horne. "I Miss Being Me": Phenomenological effects of Deep Brain Stimulation.” American Journal of Bioethics Neuroscience 8, no. 2 (2017): 96-109. DOI 10.1080/21507740.2017.1320319
Gilbert, Frédéric. “Deep Brain Stimulation: Inducing Self-Estrangement." Neuroethics (2017). DOI: 10.1007/s12152-017-9334-7
Goering, Sara. “Thinking Differently: Neurodiversity and Neural Engineering.” In Handbook of Neuroethics, edited by Rommelfanger and Johnson, 37-50, Routledge, 2017.
Goering, Sara, Tim Brown, and Jenan Alsarraf. “Others’ contributions to narrative identity matter.” AJOB Neuroscience 8, no. 3 (2017): 176-178.
Goering, Sara, Eran Klein, Darin D. Dougherty, and Alik S. Widge. “Staying in the loop: Relational Agency and Identity in Next Generation DBS for Psychiatry.” AJOB Neuroscience 8, no. 2 (2017): 59-70.
Klein, Eran. "Neuromodulation ethics: Preparing for brain-computer interface (BCI) medicine." In Neuroethics: Anticipating the Future, edited by Judy Illes and Sharmin Hossain, 123-143. Oxford University Press, 2017.
Klein, Eran. "Who invited the clinical neuroethicist?" Journal of Hospital Ethics 4, no. 2 (2017): 60-64. ISSN 1938-4955
Goering, Sara. “Thinking Differently: Neurodiversity and Neural Engineering.” In Routledge Handbook of Neuroethics, edited by L. Syd M Johnson and Karen S. Rommelfanger (Routledge, 2017)
Herron, Jeffrey, Margaret Thompson, Tim Brown, Howard Chizeck, Jeffrey Ojemann, and Andrea Ko. “Chronic ECoG for Sensing Movement Intention and Closed-Loop DBS with Wearable Sensors in an Essential Tremor Patient.” Journal of Neurosurgery 127, no. 3 (Sep 2017): 580-587.
Campbell, Stephen M. and Joseph Stramondo. "The Complicated Relationship of Disability and Well-being." The Kennedy Institute for Ethics Journal 27, no. 2 (June 2017): 151-184.
Brown, Tim, Margaret Thompson, Jeffrey Herron, Andrea Ko, Howard Chizeck, and Sara Goering. “Controlling Our Brains — On the Ethical Implications of Brain Computer Interface-Triggered Deep Brain Stimulation for Essential Tremor.” Brain-Computer Interfaces 3 (2016): 165-170.
Klein, Eran, Sara Goering, Josh Gagne, Conor V. Shea, Rachel Franklin, Samuel Zorowitz, Darin D. Dougherty, and Alik S. Widge. “Brain-Computer Interface-Based Control of Closed-Loop Brain Stimulation: Attitudes and Ethical Considerations.” Brain-Computer Interfaces 3 (2016): 1–9.
Klein, Eran, and Jeffrey Ojemann. “Informed Consent in Implantable BCI Research: Identification of Research Risks and Recommendations for Development of Best Practices.” Journal of Neural Engineering 13 (2016): 43001–43001.
Byram, AC, G Lee, AM Owen, U Ribary, AJ Stoessl, A Townson, and Judy Illes. Ethical and Clinical Considerations at the Intersection of Functional Neuroimaging and Disorders of Consciousness. Camb Q Healthc Ethics 25 (2016):613-22.
Specker Sullivan, Laura and Judy Illes. “Beyond ‘Communication and Control’: Towards Ethically Complete Rationales for Brain Computer Interface Research.” Brain-Computer Interfaces 3 (2016): 156-163.
Specker Sullivan, Laura. “Uncovering Metaethical Assumptions in Bioethics Across Cultures.” Kennedy Institute of Ethics Journal 26 (2016): 47-78.
Stramondo, Joseph. “Why Bioethics Needs a Disability Moral Psychology.” The Hastings Center Report 46 (2016): 22-30.
Brown, Tim, Patrick Moore, Jeffrey Herron, Margaret Thompson, Tamara Bonaci, Howard J. Chizeck, and Sara Goering. “Personal Responsibility in the Age of User-Controlled Neuroprosthetics.” Paper presented at the IEEE International Symposium on Ethics in Engineering, Science and Technology, Vancouver, British Columbia, May 13-14, 2016.
Brown, Tim & Laura Specker-Sullivan. “Engineering Uncertainty at the Intersection of Agency, Autonomy, and Authenticity.” Paper presented at Bioethics: Preparing for the Unknown, Center for the Study of Ethics in Society, Western Michigan University, Kalamazoo, Michigan, March 17-18, 2016.
Specker Sullivan, Laura and Peter Reiner. “Persuasive Devices: From Paternalistic to Maternalistic Choice Architectures”. Paper presented at the annual meeting of the International Neuroethics Society, San Diego, California, November 10-11, 2016.
Specker Sullivan, Laura and Judy Illes. “At the Ethics Interface of Brain Computer Interfaces”. Paper presented at the annual meeting of the International Neuroethics Society, San Diego, California, November 10-11, 2016.
Specker Sullivan, Laura. “Can Neuroethicists Create a Transdisciplinary Standpoint?” Panel with Sara Goering and Paul Ford. Paper presented at the annual meeting of the American Society for Bioethics and Humanities (ASBH), Washington, DC, October 6-9, 2016.
Specker Sullivan, Laura. “Normality Through the Lens of Neural Engineering.” Paper presented at the International Conference of Japan Association for Philosophical and Ethical Research in Medicine, 2015.
NIH RF1 (2018-2022): Human Agency and Brain-Computer Interfaces: Understanding users’ experiences and developing a tool for improved consent
(PIs Goering and Klein; partners at Freiburg University, Cal Tech, Brown University, and Utrecht University; $1.3 million over four years)
Abstract: Neural prosthetic devices for sensorimotor and psychiatric disorders are in development as a priority area of the BRAIN Initiative yet they raise important ethical concerns about human agency. Agency, our ability to act and to take ownership of our thoughts and actions, is central to individual identity and moral responsibility. Although concerns about agency are often raised in the literature on neural prosthetics, agency remains a complex phenomenon that is (1) poorly understood, (2) difficult to study through quantitative or one-off qualitative “outsider” methods, and (3) without resources to help research participants understand agency side effects and engage in meaningful informed consent.
In this project, we aim to address these gaps. We will (1) conduct a comprehensive survey of the relevant literature on agency and neurotechnology in order to construct a concept map of neural agency, (2) use a longitudinal and phenomenological interview method to better understand and explore user perspectives on agency, and integrate those perspectives into a user-centered neural agency framework, and (3) develop a communication tool (a question prompt list or QPL) that research participants and patients can use to understand and discuss potential agency effects of neural devices during the informed consent process.
NIH Ethics Supplement (2018-19): Parent grant (at Massachusetts General Hospital): Combined Cortical and Subcortical Recordings for the Treatment of Obsessive Compulsive Disorder
(PIs Dougherty and Widge). The ethics supplemental grant involves interviews with users of these neural devices for OCD and their closest family member, to better understand the experience of using the device, in relation to issues of agency, identity and privacy. (Co-investigators, Goering and Klein; RA Boulicault)
Abstract: The current project aims to understand the neural circuits underlying OCD but also to understand how DBS technology affects people in their daily lives. One central area that gives meaning to people’s lives is their relationships with family members and loved ones. Little is known about how family members understand DBS in psychiatry, their expectations for its effects, and their satisfaction with implanted devices (and the changes that occur in their loved ones). This project will include interviews with patients, families, and psychiatric DBS researchers in order to understand how family pre-implant expectations influence the informed consent process and how family post-implant experiences modify patient satisfaction with adaptive DBS.
NIH Ethics Supplement (2018-19): Parent grant (at the University of Pennsylvania): Intraoperative studies of learning and decision making during deep brain stimulation surgery
(PIs Baltuch and Gold). The ethics supplement looks at questions of expectations regarding research, participant conceptions of mind and experience during awake portions of DBS surgery, and sense of agency while using the DBS device.
Abstract: This proposed research supplement examines patients’ intraoperative experiences during awake deep brain stimulation (DBS) and the parent grant’s decision-making task itself. DBS surgeries that involve awake phases are increasingly common yet there is surprisingly little empirical attention to patient experiences of the intraoperative awake phase of the DBS or other neural implant surgery. Given evidence that a significant number of patients experience psychological or somatic effects of this phase of surgery, more attention ought to be given to patients’ intraoperative experiences. We will conduct a mixed methods study of patients participating in awake surgery, exploring motivations for research participation, expectations about the awake surgery, the phenomenological experience of awake surgery, and sense of agency/identity.