Overview
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
Recent Publications
2024
Beck, Schönau, MacDuffie, Dasgupta, Flynn, Song, Goering, and Klein (2024) “’In the spectrum of people who are healthy’: Views of individuals at risk of dementia on using neurotechnology for cognitive enhancement” Neuroethics 17(2): 1-18.
Dasgupta, Klein, Cabrera, Chiong, Feinsinger, Fins, Haeusermann, Hendriks, Lazaro-Munoz, Kubu, Mayberg, Ramos, Roskies, Sankary, Walton, Widge, and Goering (2024) “What Happens After a Neural Implant Study? Neuroethics Expert Workshop on Post-Trial Obligations” Neuroethics 17:22 https://doi.org/10.1007/s12152-024-09549-2
Borrmann, Versalovic, Brown, Scholl, Klein, Goering, Müller, and Kellmeyer (2024) “Situated and ethically sensitive interviewing: critical phenomenology in the context of neurotechnology” Ch. 10 in Neuro-ProsthEthics: Ethical Implications of Applied Situated Cognition (eds. Heinrichs, Beck and Friedrich). Springer.
Goering, Brown and Klein (2024) “Brain Pioneers and Moral Entanglement: An Argument for Post-Trial Responsibilities in Neural-Device Trials” Hastings Center Report 54(1): 24-33. DOI: 10.1002/hast.1566
Tubig and Klein (2024) “Cognitive Enhancement as Transformative Experience: The Challenge of Wrapping One’s Mind Around Enhanced Cognition via Neurostimulation” Cambridge Quarterly of Healthcare Ethics 1-16.
Goering, Beck, Dorfman, Schwarzwalder and Wohns (2024) “Privacy protections in and across contexts: why we need more than contextual integrity” AJOB Neuroscience 15(2): 149-151.
2023
Ligthart, Ienca, Meynen, Molnar-Gabor, Adnorno, Bublitz, Catley, Claydon, Douglas, Farahany, Fins, Goering, Haselager, Jotterand, Lavazza, McCay, Paz, Rainey, Ryberg and Kellmeyer (2023) “Minding Rights: Mapping Ethical and Legal Foundations of ‘Neurorights’” Cambridge Quarterly of Healthcare Ethics 32(4): 461–481.
Klein and Goering (2023) “Can I hold that thought for you? Dementia and Shared Relational Agency” Hastings Center Report 5: 17-29.
Boulicault, Goering, Klein, Dougherty and Widge (2023) “The role of family members in psychiatric deep brain stimulation trials: More than psychosocial support” Neuroethics 16:14 https://doi.org/10.1007/s12152-023-09520-7
Klein, Montes, Dasgupta, MacDuffie, Schönau, Flynn, Song and Goering (2023) “Views of stakeholders at risk for dementia about deep brain stimulation for cognition” Brain Stimulation 16: 742-747.
Klein (2023) “What does it mean to call a medical device invasive?” Medicine, health care, and philosophy. 3: 325-334.
Versalovic, Klein, Goering, Ngo, Gliske, Boulicault, Specker Sullivan, Thomas and Widge (2023) “DBS for substance use disorders? An exploratory qualitative study of perspectives of people currently in treatment” Journal of Addiction Medicine DOI: 10.1097/ADM.0000000000001150
Reardon, Lee, Goering, Fullerton, Cho, Panofsky, and Hammonds (2023) “From Trust to Trustworthiness: Building Equitable and Ethical Science” Cell 186: 1-5. https://doi.org/10.1016/j.cell.2023.01.008
Adsit-Morris, Collins, Goering, Karabin, Lee and Reardon (2023) “Unbounding ELSI: The Ongoing Work of Centering Equity and Justice” AJOB 23(7): 103-105.
Goering and Klein (2023) “Why taking psychosocial effects of neurotechnology seriously matters” AJOB Neuroscience 14(3): 307-309.
2022
Schönau, Goering, Versalovic, Montes, Brown, Dasgupta, Klein (2022) "Asking questions that matter - Question Prompt Lists as tools for improving the consent process for neurotechnology clinical trials" Frontiers in Human Neuroscience 16: 983226; doi: 10.3389/fnhum.2022.983226
Versalovic, Goering and Klein (2022) “Data, privacy, and agency: beyond transparency to empowerment” AJOB 22(7): 63-65 https://doi.org/10.1080/15265161.2022.2075975
Goering, Brown, McCusker, Montes, Schönau, Versalovic, and Klein (2022) “Integrating Equity Work throughout Bioethics” AJOB Neuroscience 22(1): 26-27.
2021
Goering, Klein, Specker Sullivan, Wexler et al. (2021) “Recommendations for the Responsible Development and Application of Neurotechnologies” Neuroethics https://doi.org/10.1007/s12152-021-09468-6
Goering, Wexler and Klein (2021) “Trading Vulnerabilities: Living with Parkinson’s Disease before and after Deep Brain Stimulation” Cambridge Quarterly of Healthcare Ethics 30(4): 1-8.
Dasgupta, I., Schönau, A, Brown, T., Klein, E., and Goering, S. (2021) “Does Closed-Loop DBS for Treatment of Psychiatric Disorders Raise Salient Authenticity Concerns?” In: Ethics of Artificial Intelligence in Brain and Mental Health (eds. Jotterand and Ienca), 217-231, Springer.
Wexler, Choi, Ramayya, Sharma, McShane, Buch, Donley-Fletcher, Gold, Baltuch, Goering, and Klein (2021) “Ethical Issues in Intraoperative Neuroscience Research: Assessing Subjects’ Recall of Informed Consent and Motivations for Participation” AJOB Empirical Bioethics https://doi.org/10.1080/23294515.2021.1941415
Schönau, Brown, Dasgupta, Klein, Versalovic and Goering (2021) “Mapping the Dimensions of Agency” AJOB Neuroscience 12(2-3): 172–186. DOI: 10.1080/21507740.2021.1896599
Tubig and McCusker (2021) “Fostering the trustworthiness of researchers: SPECS and the role of ethical reflexivity in novel neurotechnology research” Research Ethics 17(2): 143-161.
Goering, Brown and Klein (2021) “Neurotechnology Ethics and Relational Agency” Philosophy Compass 16(4): DOI: 10.1111/phc3.12734
2020
Brown (2020) “Building Intricate Partnerships with Neurotechnology: Deep Brain Stimulation and Relational Agency” IJFAB 13(1): 134-154.
Goering and Klein (2020) “Fostering Neuroethics Integration with Neuroscience in the BRAIN Initiative: Comments on the NIH Neuroethics Roadmap (2020)” AJOB Neuroethics 11:3, 184-188, https://doi.org/10.1080/21507740.2020.1778120
Goering and Specker Sullivan (2020) “Introduction to the Special Section: Feminist Approaches to Neurotechnologies” IJFAB 13(1): 89–97
Goering and Klein (2020) “Embedding ethics in neural engineering: An integrated transdisciplinary collaboration” In A Guide to Field Philosophy: Case Studies and Practical Strategies (eds. Brister and Frodeman), pp. 17-34, Routledge.
Dasgupta, Versalovic, Schönau, Klein and Goering (2020) “BCI Mediated Action and Responsibility: Questioning the Distinction Between Non-Disabled Recreation and Disability-Related Necessity” AJOB Neuroscience 11(1): 63-65.
2019
Hendriks, Grady, Ramos, … Goering, et al. (2019) “Ethical challenges of risk, informed consent, and post-trial responsibilities in human research with neural devices: a review” JAMA Neurology doi:10.1001/jamaneurol.2019.3523
Gilbert, Brown, Dasgupta, Martens, Klein and Goering (2019) “An Instrument to Capture the Phenomenology of Implanted Brain Device Use” Neuroethics https://doi.org/10.1007/s12152-019-09422-7
Goering and Klein (2019) “Neurotechnologies and Justice by, with and for Disabled People” in Oxford Handbook of Philosophy and Disability (eds. David Wasserman and Adam Cureton), 2019. DOI: 10.1093/oxfordhb/9780190622879.013.33
Klein “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 and 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.
MacDuffie and Goering (2019) “Neurotechnologies cannot seize thoughts: a call for caution in nomenclature” AJOB Neuroscience 10(1): 23-25.
2018
Brown, T. “Mandatory Neurointerventions and the Risk of Racial Disparity.” AJOB Neuroscience 9, no. 3 (2018): 156-157, DOI: 10.1080/21507740.2018.1496183
Gilbert, Viaña, and Ineichen. (2018) "Deflating the 'DBS causes personality changes' bubble." Neuroethics. DOI: 10.1007/s12152-018-9373-8
Gilbert, O'Brien, and Cook (2018) "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(2): 316-325.
Gilbert and Tubig (2018) "Cognitive Enhancement with Brain Implants: The Burden of Abnormality." Journal of cognitive Enhancement 2(4): 364–368. doi.org/10.1007/s41465-018-0105-0
Gilbert and Viaña (20178) "A Personal narrative on living and dealing with psychiatric symptoms after DBS surgery." Narrative Inquiry in Bioethics 8(1): 67-78.
Gilbert (2018) "Deep Brain Stimulation: Inducing Self-Estrangement." Neuroethics 11 (2): 157-165. DOI: 10.1007/s12152-017-9334-7
Klein, Peters, and Higger (2018) "Ethical Considerations in Ending Exploratory Brain–Computer Interface Research Studies in Locked-in Syndrome." Cambridge Quarterly of Healthcare Ethics 27(4): 660-674.
Klein and Rubel (2018) "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.
Martens and Brown (2018) “Relational Autonomy and the Quantified Relationship.” AJOB 18(2): 39-40. DOI: 10.1080/15265161.2017.1409835
Pham, Goering, Sample, Huggins, and Klein (2018) “Asilomar survey: Researcher perspectives on ethical principles and guidelines for BCI research.” Brain-Computer Interfaces (2018): 1-15.
Stramondo (2018) “The distinction between curative and assistive technology.” Science and Engineering Ethics https://doi.org/10.1007/s11948-018-0058-9 Published Online May 1, 2018.
Viaña and Gilbert (2018) "Deep Brain Stimulation for people with Alzheimer's disease: anticipating potential effects on the tripartie self." Dementia: International journal of social research and practice. https://doi.org/10.1177/1471301218761147
Viaña, Carter, and Gilbert (2018) "Of Meatballs and Invasive Neurotechnological Trials: Additional Considerations for Complex Clinical Decisions." American Journal of Bioethics Neuroscience 9(2): 100-104.
2017
Brown and Thompson (2017) "When Neuroethicists Become Labmates." The Neuroethics Blog. Retrieved on January 16, 2018, from http://www.theneuroethicsblog.com/2017/02/when-neuroethicists-become-labmates.html
Gilbert, Cook, O'Brien, and Illes (2017) “Embodiment and Estrangement: Results from a First-in-Human 'Intelligent Brain Computer Interface' Trial.” Science and Engineering Ethics DOI 10.1007/s11948-017-0001-5
Gilbert, Goddard, Viaña, Carter, and Horne (2017) "I Miss Being Me": Phenomenological effects of Deep Brain Stimulation.” American Journal of Bioethics Neuroscience 8(2): 96-109. DOI 10.1080/21507740.2017.1320319
Gilbert (2017) “Deep Brain Stimulation: Inducing Self-Estrangement." Neuroethics DOI: 10.1007/s12152-017-9334-7
Goering (2017) “Thinking Differently: Neurodiversity and Neural Engineering.” In Handbook of Neuroethics, edited by Rommelfanger and Johnson, 37-50, Routledge.
Goering, Brown, and Alsarraf (2017) “Others’ contributions to narrative identity matter.” AJOB Neuroscience 8(3): 176-178.
Goering, Klein, Dougherty, and Widge *(2017) “Staying in the loop: Relational Agency and Identity in Next Generation DBS for Psychiatry.” AJOB Neuroscience 8(2): 59-70.
Klein (2017) "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.
Klein (2017) "Who invited the clinical neuroethicist?" Journal of Hospital Ethics 4 (2): 60-64. ISSN 1938-4955
Herron, Thompson, Brown, Chizeck, Ojemann, and Ko (2017) “Chronic ECoG for Sensing Movement Intention and Closed-Loop DBS with Wearable Sensors in an Essential Tremor Patient.” Journal of Neurosurgery 127(3): 580-587.
Campbell and Stramondo (2017) "The Complicated Relationship of Disability and Well-being." The Kennedy Institute for Ethics Journal 27(2): 151-184.
Goering, Brown and Alsarraf (2017) “Other people's contributions to an individual's narrative identity matter for DBS” AJOB Neuroscience 8(3): 176-178.
Goering and Specker Sullivan (2017) “Neuroethics” in eLS (the online Encyclopedia of Life Sciences). In: eLS (the online Encyclopedia of Life Sciences), John Wiley & Sons, Ltd: Chichester. DOI: 10.1002/9780470015902.a0027184
2016
Brown, Thompson, Herron, Ko, Chizeck, and Goering (2016) “Controlling Our Brains — On the Ethical Implications of Brain Computer Interface-Triggered Deep Brain Stimulation for Essential Tremor.” Brain-Computer Interfaces 3: 165-170.
Klein, Goering, Gagne, Shea, Franklin, Zorowitz, Dougherty, and Widge (2016) “Brain-Computer Interface-Based Control of Closed-Loop Brain Stimulation: Attitudes and Ethical Considerations.” Brain-Computer Interfaces 3: 1–9.
Klein and Ojemann (2016) “Informed Consent in Implantable BCI Research: Identification of Research Risks and Recommendations for Development of Best Practices.” Journal of Neural Engineering 13: 43001–43001.
Moritz, Ruther, Stett, Ball, Burgard, Goering, Chudler, and Rao (2016) “New Perspectives on Neuroengineering and Neurotechnologies: NSF-DFG Workshop Report” IEEE Transactions on Biomedical Engineering (in press) DOI 10.1109/ TBME.2016.2543662. 63(7): 1354-1367.
Specker Sullivan and Illes (2016) “Beyond ‘Communication and Control’: Towards Ethically Complete Rationales for Brain Computer Interface Research.” Brain-Computer Interfaces 3: 156-163.
Specker Sullivan (2016) “Uncovering Metaethical Assumptions in Bioethics Across Cultures.” Kennedy Institute of Ethics Journal 26: 47-78.
Stramondo (2016) “Why Bioethics Needs a Disability Moral Psychology.” The Hastings Center Report 46: 22-30.
2015
Klein, Brown, Sample, Truitt, and Goering (2015) “Engineering the Brain: Ethical Issues and the Introduction of Neural Devices” Hastings Center Report 45(6): 26-35.
Goering (2015) “Stimulating autonomy: DBS and the prospect of choosing to control ourselves through stimulation” (editorial); AJOB Neuroscience 6(4): 1-3.
2014
Goering (2014) “Is it Still Me? DBS, Agency, and the Extended, Relational Me” AJOB Neuroscience 5(4): 50-51, 2014.
Presentations
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.
Grants
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.