Published on in Vol 23, No 2 (2021): February

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/25120, first published .
Revolutionizing Medical Data Sharing Using Advanced Privacy-Enhancing Technologies: Technical, Legal, and Ethical Synthesis

Revolutionizing Medical Data Sharing Using Advanced Privacy-Enhancing Technologies: Technical, Legal, and Ethical Synthesis

Revolutionizing Medical Data Sharing Using Advanced Privacy-Enhancing Technologies: Technical, Legal, and Ethical Synthesis

Journals

  1. Bentzen H, Castro R, Fears R, Griffin G, ter Meulen V, Ursin G. Remove obstacles to sharing health data with researchers outside of the European Union. Nature Medicine 2021;27(8):1329 View
  2. Scheibner J, Ienca M, Vayena E. Health data privacy through homomorphic encryption and distributed ledger computing: an ethical-legal qualitative expert assessment study. BMC Medical Ethics 2022;23(1) View
  3. Luo C, Islam M, Sheils N, Buresh J, Reps J, Schuemie M, Ryan P, Edmondson M, Duan R, Tong J, Marks-Anglin A, Bian J, Chen Z, Duarte-Salles T, Fernández-Bertolín S, Falconer T, Kim C, Park R, Pfohl S, Shah N, Williams A, Xu H, Zhou Y, Lautenbach E, Doshi J, Werner R, Asch D, Chen Y. DLMM as a lossless one-shot algorithm for collaborative multi-site distributed linear mixed models. Nature Communications 2022;13(1) View
  4. Kim M, Wang S, Jiang X, Harmanci A. SVAT: Secure outsourcing of variant annotation and genotype aggregation. BMC Bioinformatics 2022;23(1) View
  5. Guo L, Gao W, Cao Y, Lai X. Research on medical data security sharing scheme based on homomorphic encryption. Mathematical Biosciences and Engineering 2022;20(2):2261 View
  6. McCradden M, Anderson J, A. Stephenson E, Drysdale E, Erdman L, Goldenberg A, Zlotnik Shaul R. A Research Ethics Framework for the Clinical Translation of Healthcare Machine Learning. The American Journal of Bioethics 2022;22(5):8 View
  7. Kernebeck S, Busse T, Jux C, Bork U, Ehlers J. Electronic Medical Records for (Visceral) Medicine: An Overview of the Current Status and Prospects. Visceral Medicine 2021;37(6):476 View
  8. Lazic I, Agullo F, Ausso S, Alves B, Barelle C, Berral J, Bizopoulos P, Bunduc O, Chouvarda I, Dominguez D, Filos D, Gutierrez-Torre A, Hesso I, Jakovljević N, Kayyali R, Kogut-Czarkowska M, Kosvyra A, Lalas A, Lavdaniti M, Loncar-Turukalo T, Martinez-Alabart S, Michas N, Nabhani-Gebara S, Raptopoulos A, Roussakis Y, Stalika E, Symvoulidis C, Tsave O, Votis K, Charalambous A. The Holistic Perspective of the INCISIVE Project—Artificial Intelligence in Screening Mammography. Applied Sciences 2022;12(17):8755 View
  9. Acosta J, Falcone G, Rajpurkar P, Topol E. Multimodal biomedical AI. Nature Medicine 2022;28(9):1773 View
  10. Allam A, Feuerriegel S, Rebhan M, Krauthammer M. Analyzing Patient Trajectories With Artificial Intelligence. Journal of Medical Internet Research 2021;23(12):e29812 View
  11. Guo S, Dang Y, She B, Li Y. Sharing intention of electronic health records in online health communities: Patients’ behavioral decisions in the context of privacy protection measures. Frontiers in Psychology 2022;13 View
  12. Halfpenny W, Baxter S. Towards effective data sharing in ophthalmology: data standardization and data privacy. Current Opinion in Ophthalmology 2022;33(5):418 View
  13. Eke D, Aasebø I, Akintoye S, Knight W, Karakasidis A, Mikulan E, Ochang P, Ogoh G, Oostenveld R, Pigorini A, Stahl B, White T, Zehl L. Pseudonymisation of neuroimages and data protection: Increasing access to data while retaining scientific utility. Neuroimage: Reports 2021;1(4):100053 View
  14. Rehm H, Page A, Smith L, Adams J, Alterovitz G, Babb L, Barkley M, Baudis M, Beauvais M, Beck T, Beckmann J, Beltran S, Bernick D, Bernier A, Bonfield J, Boughtwood T, Bourque G, Bowers S, Brookes A, Brudno M, Brush M, Bujold D, Burdett T, Buske O, Cabili M, Cameron D, Carroll R, Casas-Silva E, Chakravarty D, Chaudhari B, Chen S, Cherry J, Chung J, Cline M, Clissold H, Cook-Deegan R, Courtot M, Cunningham F, Cupak M, Davies R, Denisko D, Doerr M, Dolman L, Dove E, Dursi L, Dyke S, Eddy J, Eilbeck K, Ellrott K, Fairley S, Fakhro K, Firth H, Fitzsimons M, Fiume M, Flicek P, Fore I, Freeberg M, Freimuth R, Fromont L, Fuerth J, Gaff C, Gan W, Ghanaim E, Glazer D, Green R, Griffith M, Griffith O, Grossman R, Groza T, Guidry Auvil J, Guigó R, Gupta D, Haendel M, Hamosh A, Hansen D, Hart R, Hartley D, Haussler D, Hendricks-Sturrup R, Ho C, Hobb A, Hoffman M, Hofmann O, Holub P, Hsu J, Hubaux J, Hunt S, Husami A, Jacobsen J, Jamuar S, Janes E, Jeanson F, Jené A, Johns A, Joly Y, Jones S, Kanitz A, Kato K, Keane T, Kekesi-Lafrance K, Kelleher J, Kerry G, Khor S, Knoppers B, Konopko M, Kosaki K, Kuba M, Lawson J, Leinonen R, Li S, Lin M, Linden M, Liu X, Liyanage I, Lopez J, Lucassen A, Lukowski M, Mann A, Marshall J, Mattioni M, Metke-Jimenez A, Middleton A, Milne R, Molnár-Gábor F, Mulder N, Munoz-Torres M, Nag R, Nakagawa H, Nasir J, Navarro A, Nelson T, Niewielska A, Nisselle A, Niu J, Nyrönen T, O’Connor B, Oesterle S, Ogishima S, Ota Wang V, Paglione L, Palumbo E, Parkinson H, Philippakis A, Pizarro A, Prlic A, Rambla J, Rendon A, Rider R, Robinson P, Rodarmer K, Rodriguez L, Rubin A, Rueda M, Rushton G, Ryan R, Saunders G, Schuilenburg H, Schwede T, Scollen S, Senf A, Sheffield N, Skantharajah N, Smith A, Sofia H, Spalding D, Spurdle A, Stark Z, Stein L, Suematsu M, Tan P, Tedds J, Thomson A, Thorogood A, Tickle T, Tokunaga K, Törnroos J, Torrents D, Upchurch S, Valencia A, Guimera R, Vamathevan J, Varma S, Vears D, Viner C, Voisin C, Wagner A, Wallace S, Walsh B, Williams M, Winkler E, Wold B, Wood G, Woolley J, Yamasaki C, Yates A, Yung C, Zass L, Zaytseva K, Zhang J, Goodhand P, North K, Birney E. GA4GH: International policies and standards for data sharing across genomic research and healthcare. Cell Genomics 2021;1(2):100029 View
  15. Wang J, Lin W. Privacy-Preserving Anonymity for Periodical Releases of Spontaneous Adverse Drug Event Reporting Data: Algorithm Development and Validation. JMIR Medical Informatics 2021;9(10):e28752 View
  16. Majeed A, Hwang S. A Comprehensive Analysis of Privacy Protection Techniques Developed for COVID-19 Pandemic. IEEE Access 2021;9:164159 View
  17. Bhachawat S, Shriram E, Srinivasan K, Hu Y. Leveraging Computational Intelligence Techniques for Diagnosing Degenerative Nerve Diseases: A Comprehensive Review, Open Challenges, and Future Research Directions. Diagnostics 2023;13(2):288 View
  18. Rahimzadeh V. Regulatory Angels and Technology Demons? Making Sense of Evolving Realities in Health Data Privacy for the Digital Age. The American Journal of Bioethics 2022;22(7):68 View
  19. Garcia‐Santaolalla N, de Klerk K. Ensuring Market Supply Transparency for Personal Protective Equipment: Preparing for Future Pandemics. Global Policy 2022;13(3):401 View
  20. Vishnoi A, Sapra V, Srikanth P, Sharma K. Securing medical transcription using homomorphic transform. Materials Today: Proceedings 2022;69:620 View
  21. Froelicher D, Troncoso-Pastoriza J, Raisaro J, Cuendet M, Sousa J, Cho H, Berger B, Fellay J, Hubaux J. Truly privacy-preserving federated analytics for precision medicine with multiparty homomorphic encryption. Nature Communications 2021;12(1) View
  22. Gürsoy G, Chielle E, Brannon C, Maniatakos M, Gerstein M. Privacy-preserving genotype imputation with fully homomorphic encryption. Cell Systems 2022;13(2):173 View
  23. Johnson T, Kollnig K, Dewitte P. Towards responsible, lawful and ethical data processing: patient data in the UK. Internet Policy Review 2022;11(1) View
  24. Gaudio A, Smailagic A, Faloutsos C, Mohan S, Johnson E, Liu Y, Costa P, Campilho A. DeepFixCX: Explainable privacy‐preserving image compression for medical image analysis. WIREs Data Mining and Knowledge Discovery 2023;13(4) View
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  26. Landers C, Ormond K, Blasimme A, Brall C, Vayena E. Talking Ethics Early in Health Data Public Private Partnerships. Journal of Business Ethics 2024;190(3):649 View
  27. Kim M, Sohn H, Choi S, Kim S. Requirements for Trustworthy Artificial Intelligence and its Application in Healthcare. Healthcare Informatics Research 2023;29(4):315 View
  28. Meier D, Troncoso Pastoriza J. Privacy Preserving Machine Learning. SSRN Electronic Journal 2023 View
  29. Wolfien M, Ahmadi N, Fitzer K, Grummt S, Heine K, Jung I, Krefting D, Kühn A, Peng Y, Reinecke I, Scheel J, Schmidt T, Schmücker P, Schüttler C, Waltemath D, Zoch M, Sedlmayr M. Ten Topics to Get Started in Medical Informatics Research. Journal of Medical Internet Research 2023;25:e45948 View
  30. Bernier A, Molnár-Gábor F, Knoppers B, Borry P, Cesar P, Devriendt T, Goisauf M, Murtagh M, Jiménez P, Recuero M, Rial-Sebbag E, Shabani M, Wilson R, Zaccagnini D, Maxwell L. Reconciling the biomedical data commons and the GDPR: three lessons from the EUCAN ELSI collaboratory. European Journal of Human Genetics 2024;32(1):69 View
  31. Li W, Kim M, Zhang K, Chen H, Jiang X, Harmanci A. COLLAGENE enables privacy-aware federated and collaborative genomic data analysis. Genome Biology 2023;24(1) View
  32. Lin F, Xiong B, Zhi P, Cheng E. A three-dimensional framework of perceiving privacy: A cross-national survey on contact tracing technology and privacy concerns during the COVID-19 pandemic. Computers in Human Behavior 2024;152:108047 View
  33. Bao Z, He D, Wang H, Luo M, Peng C. A Group Signature Scheme With Selective Linkability and Traceability for Blockchain-Based Data Sharing Systems in E-Health Services. IEEE Internet of Things Journal 2023;10(23):21115 View
  34. Ohta T, Hananoe A, Fukushima-Nomura A, Ashizaki K, Sekita A, Seita J, Kawakami E, Sakurada K, Amagai M, Koseki H, Kawasaki H. Best practices for multimodal clinical data management and integration: An atopic dermatitis research case. Allergology International 2024;73(2):255 View
  35. Hua Z, Ke Y, Yang Z, Di Z, Pan G, Gao K. Computer vision-aided mmWave communications for indoor medical healthcare. Computers in Biology and Medicine 2024;169:107869 View
  36. Lichtenauer N, Schmidbauer L, Wilhelm S, Wahl F. A Scoping Review on Analysis of the Barriers and Support Factors of Open Data. Information 2023;15(1):5 View
  37. Luo M, Yue Y, Du N, Xiao Y, Chen C, Huan Z. Needs for mobile and internet-based psychological intervention in patients with self-injury and suicide-related behaviors: a qualitative systematic review. BMC Psychiatry 2024;24(1) View
  38. Hau C, Woods P, Guski A, Raju S, Zhu L, Alba P, Cushman W, Glassman P, Ishani A, Taylor A, Ferguson R, Leatherman S. Strategies for secondary use of real-world clinical and administrative data for outcome ascertainment in pragmatic clinical trials. Journal of Biomedical Informatics 2024;150:104587 View
  39. Grzybowski A, Jin K, Wu H. Challenges of artificial intelligence in medicine and dermatology. Clinics in Dermatology 2024;42(3):210 View
  40. Rudnicka Z, Proniewska K, Perkins M, Pregowska A. Cardiac Healthcare Digital Twins Supported by Artificial Intelligence-Based Algorithms and Extended Reality—A Systematic Review. Electronics 2024;13(5):866 View
  41. Ormond K, Bavamian S, Becherer C, Currat C, Joerger F, Geiger T, Hiendlmeyer E, Maurer J, Staub T, Vayena E. What are the bottlenecks to health data sharing in Switzerland? An interview study. Swiss Medical Weekly 2024;154(1):3538 View
  42. Lohmöller J, Pennekamp J, Matzutt R, Schneider C, Vlad E, Trautwein C, Wehrle K. The unresolved need for dependable guarantees on security, sovereignty, and trust in data ecosystems. Data & Knowledge Engineering 2024;151:102301 View
  43. Jayousi S, Barchielli C, Alaimo M, Caputo S, Paffetti M, Zoppi P, Mucchi L. ICT in Nursing and Patient Healthcare Management: Scoping Review and Case Studies. Sensors 2024;24(10):3129 View
  44. Im E, Kim H, Lee H, Jiang X, Kim J. Exploring the tradeoff between data privacy and utility with a clinical data analysis use case. BMC Medical Informatics and Decision Making 2024;24(1) View
  45. Schultz K, Hughes M, Akram W, Mongiu A. Artificial intelligence for the colorectal surgeon in 2024 – A narrative review of Prevalence, Policies, and (needed) Protections. Seminars in Colon and Rectal Surgery 2024;35(3):101037 View
  46. Alsamhi S, Hawbani A, Kumar S, Timilsina M, Al-Qatf M, Haque R, Nashwan F, Zhao L, Curry E. Empowering Dataspace 4.0: Unveiling Promise of Decentralized Data-Sharing. IEEE Access 2024;12:112637 View
  47. Okon S, Olateju O, Ogungbemi O, Joseph S, Olisa A, Olaniyi O. Incorporating Privacy by Design Principles in the Modification of AI Systems in Preventing Breaches across Multiple Environments, Including Public Cloud, Private Cloud, and On-prem. SSRN Electronic Journal 2024 View
  48. Bai S, Zheng J, Wu W, Gao D, Gu X. Research on healthcare data sharing in the context of digital platforms considering the risks of data breaches. Frontiers in Public Health 2024;12 View
  49. Nag S, Basu N, Bose P, Bandyopadhyay S. A Novel Grammar-Based Approach for Patients’ Symptom and Disease Diagnosis Information Dissemination to Maintain Confidentiality and Information Integrity. Bioengineering 2024;11(12):1265 View
  50. Silva P, Rahimzadeh V, Powell R, Husain J, Grossman S, Hansen A, Hinkel J, Rosengarten R, Ory M, Ramos K. Health equity innovation in precision medicine: data stewardship and agency to expand representation in clinicogenomics. Health Research Policy and Systems 2024;22(1) View
  51. Guarducci S, Jayousi S, Caputo S, Mucchi L. Key Fundamentals and Examples of Sensors for Human Health: Wearable, Non-Continuous, and Non-Contact Monitoring Devices. Sensors 2025;25(2):556 View
  52. Han J, Zhang H, Ning K. Techniques for learning and transferring knowledge for microbiome-based classification and prediction: review and assessment. Briefings in Bioinformatics 2024;26(1) View
  53. Souici I, Mahamdioua M, Jacques S, Ouahabi A. Advanced genetic image encryption algorithms for intelligent transport systems. Computers and Electrical Engineering 2025;123:110162 View
  54. Cho H, Froelicher D, Chen J, Edupalli M, Pyrgelis A, Troncoso-Pastoriza J, Hubaux J, Berger B. Secure and federated genome-wide association studies for biobank-scale datasets. Nature Genetics 2025;57(4):809 View
  55. Gumusel E. Exploring Adoption of Privacy-Enhancing Technologies Among LGBTQ+ LIS Students in the United States: Motivations and Challenges. Journal of Education for Library and Information Science 2025;66(3):225 View
  56. Foster K, Costadopoulos N, Mahboubi A, Ur Rehman S, Zahidul Islam M. Toward Privacy-Preserving Data Sharing—An Australian Healthcare Perspective. IEEE Access 2025;13:39405 View
  57. Vaijainthymala Krishnamoorthy M. Data Obfuscation Through Latent Space Projection for Privacy-Preserving AI Governance: Case Studies in Medical Diagnosis and Finance Fraud Detection. JMIRx Med 2025;6:e70100 View
  58. Firdaus M, Larasati H, Hyune-Rhee K. Blockchain-based federated learning with homomorphic encryption for privacy-preserving healthcare data sharing. Internet of Things 2025;31:101579 View
  59. Meurers T, Otte K, Abu Attieh H, Briki F, Despraz J, Halilovic M, Kaabachi B, Milicevic V, Müller A, Papapostolou G, Wirth F, Raisaro J, Prasser F. A quantitative analysis of the use of anonymization in biomedical research. npj Digital Medicine 2025;8(1) View
  60. Kalra A, Khurana A, Bali S. THE SCOPE OF CIRCULAR ECONOMY IN THE HEALTHCARE SECTOR IN THE INDIAN CONTEXT. ShodhKosh: Journal of Visual and Performing Arts 2024;5(3) View
  61. Oh S, Choi Y, Joo H, Kim K. Federated Reinforcement Learning for Privacy-Preserving Sepsis Patient Treatment Model. ACM Transactions on Intelligent Systems and Technology 2025 View
  62. Utti V, Bikias T, Agarwal A, Bikia V, Zhou A, Shah M, Daneshjou R. Artificial Intelligence in Dermatology Research and Drug Discovery. Dermatologic Clinics 2025;43(4):573 View
  63. Bente B, Beerlage-de Jong N, Verdaasdonk R, van Gemert-Pijnen J. Unveiling practical insights of eHealth implementation in Europe: a grey literature review on legal, ethical, financial, and technological (LEFT) considerations. Frontiers in Digital Health 2025;7 View
  64. Cunningham J, Davies N, Devaney S, Harding M, Holm S, Neumann V, Smith C, Ainsworth J. A Review of Medical Data Sharing Initiatives with a focus on the Use of Blockchain Technologies: A QCA Analysis (Preprint). Journal of Medical Internet Research 2024 View
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  66. Zhang M, Mu D, Wang P. Influencing factors and group differences in medical data sharing in clinical research scenarios. Journal of Data and Information Science 2025;10(4):363 View
  67. Lewallen C, Ortolan D, Reichert D, Sharma R, Bharti K. Impact of artificial intelligence in vision science: A systematic review of progress, emerging trends, data domain quantification, and critical gaps. Survey of Ophthalmology 2025 View
  68. Hoonsopon D, Ketkaew C, Puriwat W, Viriyasitavat W, Tripopsakul S. How Digital Health Literacy Affects Willingness to Adopt Telemedicine in an Emerging Country: The Case of Thailand. SAGE Open 2025;15(3) View
  69. Brinz J, Eslamiamirabadi N, Salamati A, Tresp V, Schwendicke F, Tichy A. Data sharing for responsible artificial intelligence in dentistry: a narrative review of legal frameworks and privacy-preserving techniques. Journal of Dentistry 2025;163:106130 View
  70. Tsave O, Kosvyra A, Filos D, Fotopoulos D, Chouvarda I. A Multi-Dimensional Framework for Data Quality Assurance in Cancer Imaging Repositories. Cancers 2025;17(19):3213 View
  71. Lee S, Choi J, Park M, Kim H, Eo S, Lee G, Kim S, Suh J. Development of Privacy-preserving Deep Learning Model with Homomorphic Encryption: A Technical Feasibility Study in Kidney CT Imaging. Radiology: Artificial Intelligence 2025;7(6) View
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Books/Policy Documents

  1. Troncoso-Pastoriza J, Froelicher D, Hu P, Aloufi A, Hubaux J. Protecting Privacy through Homomorphic Encryption. View
  2. Graydon C, Teede H, Sullivan C, De Silva K, Enticott J. Big Data Analytics for Healthcare. View
  3. Young M. Intracranial EEG. View
  4. Kogut-Czarkowska M. GDPR Requirements for Biobanking Activities Across Europe. View
  5. Corrales Compagnucci M, Fenwick M, Aboy M, Minssen T. The Law and Ethics of Data Sharing in Health Sciences. View
  6. Li L, Dai F, He S, Yu H, Liu H. Deep Learning Approaches for Early Diagnosis of Neurodegenerative Diseases. View
  7. Pradeep Kumar Reddy B, Chatterjee A. Proceedings of International Conference on Network Security and Blockchain Technology. View
  8. Pandey S, Bhushan B, Obaid A. Generative AI in Healthcare: Concepts, Methodologies, Tools, and Applications. View

Conference Proceedings

  1. Walsh J, Varia M, Cohen A, Sellars A, Bestavros A. Proceedings of the 2022 Symposium on Computer Science and Law. Multi-Regulation Computing View
  2. Froelicher D, Cho H, Edupalli M, Sa Sousa J, Bossuat J, Pyrgelis A, Troncoso-Pastoriza J, Berger B, Hubaux J. 2023 IEEE Symposium on Security and Privacy (SP). Scalable and Privacy-Preserving Federated Principal Component Analysis View
  3. Kitamura K, Irvan M, Yamaguchi R. 2023 Eleventh International Symposium on Computing and Networking Workshops (CANDARW). Impact of Anonymity Indicator "PFDOC Entropy l-Diversity" on Medical Data Utility View
  4. Odeyomi O, Karnati H, Smith A. 2024 IEEE World AI IoT Congress (AIIoT). Preserving Medical Data with Renyi Differential Privacy View
  5. van Assen J, Kromes R, Erkin Z. 2024 6th Conference on Blockchain Research & Applications for Innovative Networks and Services (BRAINS). Auditable Medical Data Sharing through Recoverable Key Agreement View
  6. Tang S, Wang Z, Luo Y. 2024 3rd International Conference on Artificial Intelligence and Computer Information Technology (AICIT). Research on Secure Data Circulation Method Based on Blockchain and Privacy Computing View
  7. Gonçalves S, Lucas R, Viana R, Lopes T, Portugal A, Morais M, Fernández M. 2024 2nd International Conference on Federated Learning Technologies and Applications (FLTA). Evaluating Legal Compliance of Federated Learning Tools for the European Health Data Space (EHDS) View
  8. Huang A. 2025 IEEE 49th Annual Computers, Software, and Applications Conference (COMPSAC). Ethical Dimensions of Artificial Intelligence in Personalized Medicine: Navigating Challenges and Shaping Future Policies View
  9. Renardias J, Carros F, Randall D, Mueller C, Wulf V. Proceedings of the 12th International Conference on Communities & Technologies. Towards a 4-Day Week in Hospital Care: Exploring Staff Perspectives and the Role of Technology in a Local German Hospital View