Pisani Anthony R, Gallo Carlos, Gould Madelyn S, Kanuri Nitya, Marcotte John E, Pascal Brian, Rousseau David, Ranney Megan L, Filbin Bob, Turner Shairi
Department of Psychiatry, Center for the Study and Prevention of Suicide, University of Rochester Medical Center, University of Rochester, Rochester, NY, United States.
Department of Pediatrics, University of Rochester Medical Center, University of Rochester, Rochester, NY, United States.
J Med Internet Res. 2025 Jan 22;27:e59734. doi: 10.2196/59734.
We appreciate Reierson's thoughtful commentary on our 2019 paper, which described our experiences, ethical process, judgment calls, and lessons from a 2016-2017 data-sharing pilot between Crisis Text Line and academic researchers. The commentary raises important questions about the ethical conduct of health research in the digital age, particularly regarding informed consent, potential conflicts of interest, and the protection of vulnerable populations. Our article focused specifically on the noncommercial use of Crisis Text Line data for research purposes, so we restrict our reply to points relevant to such usage. While we acknowledge the limitations of Crisis Text Line's Terms of Service as a means of informing users about data sharing for research, we maintain that our guidelines were ethically sound and aligned with well-established practices for institutional review board (IRB) review and researcher training. We emphasize the critical role of IRBs in ensuring that research involving vulnerable populations, including minors, is conducted ethically and with appropriate safeguards. Regarding potential conflicts of interest, we argue that unpaid, nonfiduciary advisory board service for a nonprofit organization does not constitute a conflict requiring disclosure. The transparent nature of our collaboration with Crisis Text Line, as evidenced by the authorship and acknowledgments in our paper, further underscores our commitment to ethical research practices. We recognize the complexity and evolving nature of the challenges surrounding data-sharing partnerships in digital health research. As the field progresses, we remain committed to ongoing, transparent engagement and to refining best practices in collaboration with colleagues, stakeholders, and the public. Our response aims to provide clarity and context for the concerns raised in the commentary while reaffirming the integrity and value of our original work. Ultimately, we maintain that our paper contributed meaningfully to the ongoing discourse on ethical data sharing and laid the groundwork for future improvements in this critical area of digital health research.
我们感谢赖尔森对我们2019年论文的深入评论，该论文描述了我们在2016年至2017年危机短信热线与学术研究人员之间的数据共享试点中的经历、伦理流程、判断决策以及经验教训。该评论提出了关于数字时代健康研究伦理行为的重要问题，特别是在知情同意、潜在利益冲突以及弱势群体保护方面。我们的文章特别关注危机短信热线数据用于研究目的的非商业用途，因此我们将回复限制在与此类用途相关的要点上。虽然我们承认危机短信热线的服务条款作为向用户告知研究数据共享的一种方式存在局限性，但我们坚持认为我们的指导方针在伦理上是合理的，并且与机构审查委员会（IRB）审查和研究人员培训的既定做法一致。我们强调IRB在确保涉及弱势群体（包括未成年人）的研究以符合伦理的方式进行并采取适当保障措施方面的关键作用。关于潜在的利益冲突，我们认为为非营利组织提供无偿的、非受托的咨询委员会服务并不构成需要披露的冲突。正如我们论文中的作者身份和致谢所证明的，我们与危机短信热线合作的透明度进一步凸显了我们对伦理研究实践的承诺。我们认识到数字健康研究中数据共享伙伴关系周围挑战的复杂性和不断演变的性质。随着该领域的发展，我们仍然致力于持续、透明的参与，并与同事、利益相关者和公众合作完善最佳实践。我们的回复旨在为评论中提出的担忧提供清晰的解释和背景，同时重申我们原始工作的完整性和价值。最终，我们坚持认为我们的论文对正在进行的关于伦理数据共享的讨论做出了有意义的贡献，并为数字健康研究这一关键领域的未来改进奠定了基础。
