Investigating how people who are most likely to be directly affected by novel technologies think and feel about the prospect or actual use of them is important for understanding the ethical dimensions of device development. In our work, we prioritize the voices of disabled people who are often the first users of novel neurotechnologies, or are in populations the devices are intended to benefit. We do this primarily through interviews, focus groups, surveys, and community-based participatory research. We engage with research participants, people who live with conditions the devices target, and sometimes also their partners or close family members. In addition, we use qualitative research methods to understand the perspectives of neurotechnology researchers, physicians, and members of the neurotechnology industry.
While others have called this kind of work “stakeholder engagement”, we aim to respect decolonizing efforts in shifting away from this language; see the article "Alternatives to the word ‘stakeholder’".
People: Sara Goering, Eran Klein, Asad Beck, Andrew Brown, Tim Brown, Paul Tubig, Kate MacDuffie, Andreas Schönau, Ishan Dasgupta, Michelle Pham.
Grants:
NIH R01MH130457-02S1 “Administrative supplement on peer support” (with Michelle Pham at MSU); $105K (2023-2024)
NIH R01MH130457-01 “Caring for BRAIN pioneers: Understanding and enhancing family and researcher support in neural device trials” (R01 Neuroethics) Co-PIs Sara Goering and Eran Klein; $1.5 million (2022-2026)
NIH 1P30DA048742-01A1 “Ethics supplement to the University of Minnesota NIDA Center for Neural Circuits in Addiction", PI Mark Thomas (supplement PIs, Sara Goering and Eran Klein); $116K (2021-2022); for qualitative interview project with people in treatment for addiction at Hazelden facilities, regarding experience with addiction and attitudes toward the prospect of using DBS for treating addiction.
NIH RF1MH117800-01S2 “Alzheimer's Supplement to Human Agency and Brain-Computer Interfaces: Understanding users' experiences and developing a tool for improved consent” PIs Sara Goering and Eran Klein; $336K (2020-2022); interviews with people “at-risk” for dementia about the prospect of neuroprosthetic memory devices.
Publications:
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Beck A, Schönau A, MacDuffie K, Dasgupta I, Flynn G, Song D, Goering S, Klein E. (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):24.
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Klein E, Montes Daza N, Dasgupta I, MacDuffie K, Schönau A, Flynn G, Song D, Goering S. (2023) “Views of stakeholders at risk for dementia about deep brain stimulation for cognition” Brain Stimulation 16(3):742-747. PMID: 37076043.
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Boulicault, M., Goering, S., Klein, E. et al. (2023) “The Role of Family Members in Psychiatric Deep Brain Stimulation Trials: More Than Psychosocial Support” Neuroethics 16: 14. PMID: 37250273.
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Versalovic, E, Klein E, Goering S, Ngo Q, Gliske K, Boulicault M, Sullivan LS, Thomas MJ, Widge A. (2023) “Deep brain stimulation for substance use disorders? An exploratory qualitative study of perspectives of people currently in treatment” J Addict Med. PMID: 36877146.
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MacDuffie KE, Ransom S, and Klein E. (2022) “Neuroethics inside and out: a comparative survey of neural device industry representatives and the general public on ethical issues and principles in neurotechnology” AJOB Neuroscience. 13(1):44-54. PMID: 33787456.
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Wexler A, Choi R, Ramayya A, Sharma N, McShane B, Buch L, Donley-Fletcher M, Gold J, Baltuch G, Goering S and Klein E. (2022) “Ethical Issues in Intraoperative Neuroscience Studies: Assessing Subjects’ Recall of Informed Consent and Motivations for Participation” AJOB Empirical Bioethics 13(1):57-66.1941415. PMID: 34227925.
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Versalovic E, Diamond M and Klein E. (2022) “Re-identifying yourself”: A qualitative study of veteran views on implantable BCI for mobility and communication in ALS” Disability and Rehabilitation: Assistive Technology 17(7:807-814. PMID: 32940119.
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Goering S, Wexler A and Klein E. (2021) “Trading vulnerabilities: Living with Parkinson’s Disease before and after deep brain stimulation” Cambridge Quarterly of Healthcare Ethics. 30(4):623-630. PMID: 34702406.
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Naufel S, Klein E. (2020) “Citizen Neuroscience: Brain–Computer Interface Researcher Perspectives on Do-It-Yourself Brain Research” Science and Engineering Ethics 26(5):2769-2790. PMID: 32533446.
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Naufel SN and Klein E. (2019) “Brain-computer interface (BCI) researcher perspectives on neural data ownership and privacy” Journal of Neural Engineering. PMID:31766026.
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Pham M, Goering S, Sample M, Huggins JE, Klein E. (2018) “Asilomar survey: researcher perspectives on ethical principles and guidelines for BCI research” Brain-Computer Interfaces 5(4):97–111.
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Sullivan LS, Klein E, Brown T, Sample M, Pham M, Tubig P, et al. (2017) “Keeping Disability in Mind: A Case Study in Implantable Brain–Computer Interface Research” Science and Engineering Ethics 24(2):479–504. PMID:28643185.
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Klein E, Goering S, Gagne J, Shea CV, Franklin R, Zorowitz S, et al. (2016) “Brain-computer interface-based control of closed-loop brain stimulation: attitudes and ethical considerations” Brain-Computer Interfaces. 3(3):140–8.
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Brown, Thompson, Herron, Ko, Chizeck and Goering (2016) “Controlling Our Brains — On the Possibility of Brain Computer Interface-Triggered Deep Brain Stimulation for Essential Tremor” Brain Computer Interface 3(4): 165-170.
Tools/instruments:
- Schönau A, Goering S, Versalovic E, Montes N, Brown T, Dasgupta I, Klein E. (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. PMID: 35966997.
- Gilbert F, Brown T, Dasgupta I, Martens H, Klein E, Goering S. (2021) “An instrument to capture the phenomenology of implantable brain device use.” Neuroethics. 14(Suppl 3):333-40.