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Researcher Perspectives on Data Sharing in Deep Brain Stimulation.
Peter Zuk1, Clarissa E Sanchez1, Kristin Kostick1
1Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United States.
Frontiers in Human Neuroscience
|January 11, 2021
Summary
Researchers support sharing data from adaptive deep brain stimulation (aDBS) but face barriers. Addressing privacy, usability, and resources is key for advancing open science in neurotechnology.
Area of Science:
- Neuroscience
- Neurotechnology
- Bioethics
Background:
- Deep brain stimulation (DBS) and adaptive DBS (aDBS) research is expanding, raising critical neuroethics and policy questions regarding data sharing.
- Limited empirical research exists on the perspectives of experts actively developing these advanced neurotechnologies.
- Understanding researcher viewpoints is crucial for establishing effective data sharing frameworks in aDBS.
Purpose of the Study:
- To investigate the data sharing practices of adaptive deep brain stimulation (aDBS) researchers.
- To explore experts' perspectives on the ethical and policy issues surrounding the sharing of aDBS data.
- To identify barriers and potential solutions for enhancing data sharing in aDBS research.
Main Methods:
- Conducted semi-structured, open-ended interviews with researchers involved in adaptive deep brain stimulation (aDBS) development.
- Focused interviews on current data sharing practices, attitudes towards sharing, and perceived ethical/policy challenges.
- Analyzed qualitative data to identify common themes and divergent views on data sharing.
Main Results:
- Researchers express strong support for data sharing, viewing it as essential for scientific advancement, with most either currently sharing or planning to share data.
- Significant heterogeneity exists in data sharing practices, including the types of sharing partners, indicating a gap from open science principles.
- Key concerns include data privacy, usability by others, data ownership/commercialization, and resource limitations, alongside varied views on the sensitivity of neural activity data (NAD).
Conclusions:
- While aDBS researchers are committed to data sharing, practical barriers and ethical considerations require targeted solutions.
- Proposed solutions include enhanced privacy safeguards, standardization for data usability, professional norms for ownership, and streamlined data transmission.
- Findings provide essential input for researchers, policymakers, and neuroethicists navigating data sharing policies in aDBS research.
