People who participate in neurotechnology research are sometimes described as “pioneers” who take on challenges and risks in order to help science advance. Making sure that they and their caregivers have the right kinds of support is important. Exploring what kinds of support they have, and would like, can provide researchers with an understanding of some of the invisible or under-recognized forms of support that brain pioneers rely on. Our overarching goal is to ensure that brain pioneers are well respected and supported, and that the pioneering experience is successful in future research trials.
People: Sara Goering, Eran Klein, Natalie Dorfman, Nicolai Wohns, Andrew Brown, Kate MacDuffie.
Grants:
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 R01MH130457-02S1 “Administrative supplement on peer support” (with Michelle Pham at MSU); $105K (2023-2024)
Publications:
- Goering, Brown A, 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.
- Brown A (2024) “Valuing Subjectivity beyond the Brain, but also beyond Psychology and Phenomenology: Why an International Declaration on Neurotechnologies Should Incorporate Insights from Social Theory as Well.” AJOB Neuroscience.
- 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.
Works in progress:
Brown, A, MacDuffie, Goering, and Klein (under review) “The ‘wheels that keep me goin’’: invisible forms of support for brain pioneers.”