Authors' Reply: Commentary on “Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line”
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 ethica...
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| Format: | Article |
| Language: | English |
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JMIR Publications
2025-01-01
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| Series: | Journal of Medical Internet Research |
| Online Access: | https://www.jmir.org/2025/1/e59734 |
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| author | Anthony R Pisani Carlos Gallo Madelyn S Gould Nitya Kanuri John E Marcotte Brian Pascal David Rousseau Megan L Ranney Bob Filbin Shairi Turner |
| author_facet | Anthony R Pisani Carlos Gallo Madelyn S Gould Nitya Kanuri John E Marcotte Brian Pascal David Rousseau Megan L Ranney Bob Filbin Shairi Turner |
| author_sort | Anthony R Pisani |
| collection | DOAJ |
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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. |
| format | Article |
| id | doaj-art-a147c3a98e1346128436075ff30a2073 |
| institution | Kabale University |
| issn | 1438-8871 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | Journal of Medical Internet Research |
| spelling | doaj-art-a147c3a98e1346128436075ff30a20732025-01-22T20:00:25ZengJMIR PublicationsJournal of Medical Internet Research1438-88712025-01-0127e5973410.2196/59734Authors' Reply: Commentary on “Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line”Anthony R Pisanihttps://orcid.org/0000-0003-4698-8432Carlos Gallohttps://orcid.org/0000-0003-3270-8786Madelyn S Gouldhttps://orcid.org/0000-0002-2881-9152Nitya Kanurihttps://orcid.org/0000-0002-8708-4352John E Marcottehttps://orcid.org/0000-0002-6199-4454Brian Pascalhttps://orcid.org/0000-0001-9171-5084David Rousseauhttps://orcid.org/0000-0001-9468-8886Megan L Ranneyhttps://orcid.org/0000-0002-8450-9642Bob Filbinhttps://orcid.org/0000-0002-1330-245XShairi Turnerhttps://orcid.org/0000-0003-3559-5940 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.https://www.jmir.org/2025/1/e59734 |
| spellingShingle | Anthony R Pisani Carlos Gallo Madelyn S Gould Nitya Kanuri John E Marcotte Brian Pascal David Rousseau Megan L Ranney Bob Filbin Shairi Turner Authors' Reply: Commentary on “Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line” Journal of Medical Internet Research |
| title | Authors' Reply: Commentary on “Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line” |
| title_full | Authors' Reply: Commentary on “Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line” |
| title_fullStr | Authors' Reply: Commentary on “Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line” |
| title_full_unstemmed | Authors' Reply: Commentary on “Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line” |
| title_short | Authors' Reply: Commentary on “Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line” |
| title_sort | authors reply commentary on protecting user privacy and rights in academic data sharing partnerships principles from a pilot program at crisis text line |
| url | https://www.jmir.org/2025/1/e59734 |
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