JMIR Publications

ABSTRACT

We appreciate Reierson's thoughtful commentary on our 2019 paper, which described our experiences, ethical process, judgment calls, and lessons from a 2016-17 data sharing pilot between Crisis Text Line (CTL) 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 CTL data for research purposes, so we restrict our reply to points relevant to such usage. While we acknowledge the limitations of CTL'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 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 non-fiduciary advisory board service does not constitute a conflict requiring disclosure. The transparent nature of our collaboration with CTL, 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.