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Authors' Reply: Commentary on "Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles

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  • 1Department of Psychiatry, Center for the Study and Prevention of Suicide, University of Rochester Medical Center, University of Rochester, Rochester, NY, United States.

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Summary
This summary is machine-generated.

This study reaffirms ethical guidelines for sharing crisis text line data with researchers, emphasizing institutional review board (IRB) oversight and transparent practices for protecting vulnerable populations in digital health research.

Keywords:
cooperative behaviordata sharingdigital dataethicstechnologytext messaging

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Area of Science:

  • Digital Health Research
  • Data Ethics
  • Public Health

Background:

  • The commentary questioned ethical practices in a 2016-2017 data-sharing pilot between Crisis Text Line and academic researchers.
  • Key concerns included informed consent, conflicts of interest, and protection of vulnerable populations in digital health research.

Purpose of the Study:

  • To address commentary regarding the ethical conduct of health research in the digital age.
  • To clarify the ethical framework and practices employed in the Crisis Text Line data-sharing pilot.
  • To reaffirm the integrity and value of the original research on noncommercial data use.

Main Methods:

  • The response focuses on the ethical considerations of noncommercial data sharing for research purposes.
  • It emphasizes the role of institutional review board (IRB) review and researcher training.
  • Transparency in collaboration and disclosure practices are highlighted.

Main Results:

  • The authors maintain their data-sharing guidelines were ethically sound and aligned with established practices.
  • They assert that unpaid advisory roles do not constitute a conflict of interest requiring disclosure.
  • The study underscores the critical role of IRBs in safeguarding vulnerable populations.

Conclusions:

  • The paper contributed to the discourse on ethical data sharing in digital health research.
  • Ongoing transparent engagement and refinement of best practices are crucial.
  • The study provides a foundation for future improvements in ethical data sharing partnerships.