Published on in Vol 25 (2023)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/42131, first published .
Opt-In and Opt-Out Consent Procedures for the Reuse of Routinely Recorded Health Data in Scientific Research and Their Consequences for Consent Rate and Consent Bias: Systematic Review

Opt-In and Opt-Out Consent Procedures for the Reuse of Routinely Recorded Health Data in Scientific Research and Their Consequences for Consent Rate and Consent Bias: Systematic Review

Opt-In and Opt-Out Consent Procedures for the Reuse of Routinely Recorded Health Data in Scientific Research and Their Consequences for Consent Rate and Consent Bias: Systematic Review

Journals

  1. Verhulst S. Operationalizing digital self-determination. Data & Policy 2023;5 View
  2. Chae A, Yao M, Sagreiya H, Goldberg A, Chatterjee N, MacLean M, Duda J, Elahi A, Borthakur A, Ritchie M, Rader D, Kahn C, Witschey W, Gee J. Strategies for Implementing Machine Learning Algorithms in the Clinical Practice of Radiology. Radiology 2024;310(1) View
  3. Joyce M, Segal M, Shukla A. Ethics and Terminology for Opting In and Out. JAMA Internal Medicine 2024;184(4):451 View
  4. Lutomski J, Manders P, Chandna A. From opt-out to opt-in consent for secondary use of medical data and residual biomaterial: An evaluation using the RE-AIM framework. PLOS ONE 2024;19(3):e0299430 View
  5. de Frutos Lucas J, Haugo H. Moving forward with the European health data space: the need to restore trust in European health systems. The Lancet Regional Health - Europe 2024;40:100906 View
  6. Yamamoto K, Ibuki T, Nakazawa E. The Fine Balance Between Complete Data Integrity in Medical Adaptive Machine Learning Systems and the Protection of Research Participants. The American Journal of Bioethics 2024;24(10):101 View
  7. Shen X, Brown H, Tao J, Strobel M, Tong Y, Narayan A, Soh H, Doshi-Velez F. Directions of Technical Innovation for Regulatable AI Systems. Communications of the ACM 2024;67(11):82 View
  8. Anibal J, Huth H, Gunkel J, Gregurick S, Wood B. Simulated misuse of large language models and clinical credit systems. npj Digital Medicine 2024;7(1) View
  9. Gerdon F. Attitudes on Data Use for Public Benefit: Investigating Context-Specific Differences Across Germany, Spain, and the United Kingdom With a Longitudinal Survey Experiment. Social Media + Society 2024;10(4) View
  10. Li I, Langford A, Grady C, Rid A. Ethical considerations for referral partnerships in clinical research. Journal of Medical Ethics 2024:jme-2024-109867 View
  11. Tarwid J, Childs M, Junod-Moser D, Negrouk A, Egondi T, Tipple C. Challenges of sharing individual participant data for secondary research on neglected tropical diseases: the experience of Drugs for Neglected Diseases initiative and a call for action. BMJ Open 2024;14(12):e078862 View
  12. Williams M, Karim W, Gelman J, Raza M. Ethical data acquisition for LLMs and AI algorithms in healthcare. npj Digital Medicine 2024;7(1) View
  13. Hermus M, Scharloo-Karels C, Ikram M, Andrinopoulou E, Rizopoulos D, Marck D, Michels M, Kemenade F. Opt-In versus opt-out for the secondary use of routinely recorded health data: A randomized controlled trial. European Journal of Internal Medicine 2025;133:100 View
  14. Kapadi A, Turner-Uaandja H, Holley R, Wicks K, Hamrang L, Turner B, van Staa T, Bowden C, Keane A, Price G, Faivre-Finn C, French D, Sanders C, Holm S, Devaney S. Exploring Consent to Use Real-World Data in Lung Cancer Radiotherapy: Decision of a Citizens’ Jury for an ‘Informed Opt-Out’ Approach. Health Care Analysis 2025;33(2):192 View
  15. Michaud T, Puga T, Archer R, Theye E, Zagurski C, Estabrooks P, Dai H. Enhancing Text Message Support With Media Literacy and Financial Incentives for Vaping Cessation in Young Adults: Protocol for a Pilot Randomized Controlled Trial. JMIR Research Protocols 2025;14:e60527 View
  16. Ito A, Nakamura F. Consent mechanisms and default effects in health information exchange in Japan. Frontiers in Digital Health 2025;7 View
  17. Lentine K, Fleetwood V, Caza T, Wellen J, Randall H, Rothweiler R, Caliskan Y, Lichtenberger M, Dedert C, Schnitzler M, Xiao H, Ahn Y, Brockmeier D, Marklin G. Pilot Randomized Trial Exploring the Impacts of Deceased Donor Kidney Procurement Biopsies on Organ Evaluation and Transplant Outcomes. Cureus 2025 View
  18. Michie S, Cribbs J, Utley J. Outside of School Factors That Predict Mathematics Mindset. Psychology in the Schools 2025;62(9):3057 View
  19. de Almeida J, Messiou C, Withey S, Matos C, Koh D, Papanikolaou N. Medical machine learning operations: a framework to facilitate clinical AI development and deployment in radiology. European Radiology 2025;35(11):6828 View
  20. Cotton S, Menssink J, Hamilton M, Filia K, Teo S, Wang M, Gan D, Yu W, Watson A, Witt K, Hasty M, Moller C, Yung A, Gao C. Using data linkage for mental health research in Australia. Australian & New Zealand Journal of Psychiatry 2025;59(7):588 View
  21. Kranhold A, Neuhoff L, Bunz M, Derhardt R, Schreiber F, Popp L, Kulisch L, Schneider S, Christiansen H, In-Albon T, Walper S, Bartnick C. Die Helikopter-Eltern der Forschung. Kindheit und Entwicklung 2025;34(1):5 View
  22. Roy È, Georgieva I, Fradet L, Kaewkitipong L, Guitton M. Consenting to share data from electronic health records to research deposits: Constraints, obstacles, and proxy. Acta Psychologica 2025;258:105176 View
  23. Shero J, Swanz A, Hanson A, Hart S, Logan J. Data Deidentification for Data Sharing in Education and Psychological Research: Importance, Barriers, and Techniques. AERA Open 2025;11 View
  24. Keuper J, Hek K, van Tuyl L, Batenburg R, Verheij R. Determinants of consent for electronic health information exchange: an observational retrospective study. Health Research Policy and Systems 2025;23(1) View
  25. Fesl S, Lang C, Schmitt J, Brückner S, Gilbert S, Deckert S, Scheibe M. Factors influencing patients’ willingness to share their digital health data for primary and secondary use: A theory- and evidence-based overview of reviews. DIGITAL HEALTH 2025;11 View
  26. Olsen Q, Dyda A, Woods L, Lobo E, Eden R, Krahe M, Richards B, Pather N, McGee L, Sullivan C, Pole J. Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis. npj Digital Medicine 2025;8(1) View
  27. Ramanathan S, De La Cruz L, Ueda M, Carruthers J. Five‐Year Implementation of Zero Suicide: Lessons Learnt From an Academic Health System. Psychiatric Research and Clinical Practice 2025:n/a View
  28. Lagerwaard B, Rutgrink L, van Weelij D, Lipinska K, Bornemann T, Davey R, Fons‐Martinez J, Dupont S, Grobbee D, Zuidgeest M. Recruiting and Consenting Decentralized Clinical Trial Participants—Learnings from the Trials@Home RADIAL Proof‐of‐Concept Trial. Clinical Pharmacology & Therapeutics 2025;118(5):1067 View
  29. Donia J, Marelli L. Anticipating ethical and social dimensions of the European Health Data Space: A rapid systematic review. Health Policy 2025;162:105443 View
  30. Ménard J, Cohen D, Masse M, Adhikari N, Cook D, Heels-Ansdell D, Sprague S, D’Aragon F, Kho M, Lamontagne F, Cumyn A. Communicating Results of a Critical Care Trial — A Survey of Participants and Family Members. NEJM Evidence 2025;4(10) View
  31. McCarthy M, Wynne S, Ashworth E, Hendriks O, Saini P, Montague-Cardoso K. Behind the data: Reflections from conducting school-based suicide prevention research with young people in the United Kingdom. PLOS Mental Health 2025;2(10):e0000476 View
  32. Tory A, Hasan K. An evaluation framework for network IDS/IPS datasets: Leveraging MITRE ATT&CK and industry relevance metrics. Computers & Security 2026;161:104777 View
  33. Brückner S, Dridi A, Deshmukh A, Kirsten T, Lauber-Rönsberg A, Riedel R, Hetmank S, Welzel C, Gilbert S. A user-driven consent platform for health data sharing in digital health applications. npj Digital Medicine 2025;8(1) View

Books/Policy Documents

  1. Primec A, Pastirk G, Perko I. Balancing Human Rights, Social Responsibility, and Digital Ethics. View
  2. Resnik D. The Ethics of Research with Human Subjects. View