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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
PubMed
Summary
This summary is machine-generated.

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.

Keywords:
closed-loopcommercializationdata sharingdeep brain stimulationmental health dataneural activity dataneuroethicsneuromodulation

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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.