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 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 View

Books/Policy Documents

  1. Primec A, Pastirk G, Perko I. Balancing Human Rights, Social Responsibility, and Digital Ethics. View