Special Section on Ethics in Health Informatics
21 August 2020 (online)
Objective: To summarize significant research contributions on ethics in medical informatics published in 2019.
Methods: An extensive search using PubMed/Medline was conducted to identify the scientific contributions published in 2019 that address ethics issues in medical informatics. The selection process comprised three steps: 1) 15 candidate best papers were first selected by the two section editors; 2) external reviewers from internationally renowned research teams reviewed each candidate best paper; and 3) the final selection of three best papers was conducted by the editorial committee of the Yearbook.
Results: The three selected best papers explore timely issues of concern to the community and demonstrate how ethics considerations influence applied informatics.
Conclusion: With regard to ethics in informatics, data sharing and privacy remain primary areas of concern. Ethics issues related to the development and implementation of artificial intelligence is an emerging topic of interest.
- 1 Perakslis E, Coravos A. Is health-care data the new blood?. Lancet Digit Heal 2019; 1 (01) e8-e9
- 2 Anderson M, Anderson SL. How should AI Be developed,validated and implemented in patient care?. AMA J Ethics 2019; 21 (02) 125-30
- 3 The European Parliament and the Council of the European Union. REGULATION (EU) 2016/679 OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation) (Text with EEA relevance); 2016
- 4 Rothstein MA, Tovino SA. California Takes the Lead on Data Privacy Law. Hastings Cent Rep 2019; 49 (05) 4-5
- 5 Lehmann CU, Petersen C, Bhatia H, Berner ES, Goodman KW. Advance Directives and Code Status Information Exchange: A Consensus Proposal for a Minimum Set of Attributes. Cambridge Q Healthc ethics 2019; 28 (01) 178-85
- 6 Maher NA, Senders JT, Hulsbergen AFC, Lamba N, Parker M, Onnela JP. , et al Passive data collection and use in healthcare: A systematic review of ethical issues. Int J Med Inform 2019; 129: 242-7
- 7 Beier K, Schweda M, Schicktanz S. Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research. BMC Med Inform Decis Mak 2019; 19 (01) 90
- 8 Geneviève LD, Martani A, Wangmo T, Paolotti D, Koppeschaar C, Kjelsø C. , et al. Participatory Disease Surveillance Systems: Ethical Framework. J Med Internet Res 2019; 21 (05) e12273
- 9 Kalkman S, Mostert M, Gerlinger C, van Delden JJM, van Thiel GJMW. Responsible data sharing in international health research: a systematic review of principles and norms. BMC Med Ethics 2019; 20 (01) 21
- 10 Mascalzoni D, Bentzen HB, Budin-Ljøsne I, Bygrave LA, Bell J, Dove ES. et al. Are Requirements to Deposit Data in Research Repositories Compatible With the European Union’s General Data Protection Regulation?. Ann Intern Med 2019; 170 (05) 332-4
- 11 Krutzinna J, Taddeo M, Floridi L. Enabling Posthumous Medical Data Donation: An Appeal for the Ethical Utilisation of Personal Health Data. Sci Eng Ethics 2019; 25 (05) 1357-87
- 12 Parasidis E, Pike E, McGraw D. A Belmont Report for Health Data. N Engl J Med 2019; 380 (16) 1493-5
- 13 Chevrier R, Foufi V, Gaudet-Blavignac C, Robert A, Lovis C. Use and Understanding of Anonymization and De-Identification in the Biomedical Literature: Scoping Review. J Med Internet Res 2019; 21 (05) e13484
- 14 Schairer CE, Cheung C, Kseniya Rubanovich C, Cho M, Cranor LF, Bloss CS. Disposition toward privacy and information disclosure in the context of emerging health technologies. J Am Med Inform Assoc 2019; 26 (07) 610-9
- 15 Bentzen HB, Høstmælingen N. Balancing Protection and Free Movement of Personal Data: The New European Union General Data Protection Regulation. Ann Intern Med 2019; 170 (05) 335-7
- 16 Oxman AD, Paulsen EJ. Who can you trust? A review of free online sources of “trustworthy” information about treatment effects for patients and the public. BMC Med Inform Decis Mak 2019; 19 (01) 35
- 17 Chiauzzi E, Wicks P. Digital Trespass: Ethical and Terms-of-Use Violations by Researchers Accessing Data From an Online Patient Community. J Med Internet Res 2019; 21 (02) e11985
- 18 Pisani AR, Kanuri N, Filbin B, Gallo C, Gould M, Soleymani Lehmann L. et al. Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line. J Med Internet Res 2019; 21 (01) e11507
- 19 Anderson M, Anderson SL. How Should AI Be Developed, Validated, and Implemented in Patient Care?. AMA J Ethics 2019; 21 (02) E125-130
- 20 Reddy S, Allan S, Coghlan S, Cooper P. A governance model for the application of AI in health care. J Am Med Inform Assoc 2020; 27 (03) 491-7
- 21 Powell J. Trust Me, I’m a Chatbot: How Artificial Intelligence in Health Care Fails the Turing Test. J Med Internet Res 2019; 21 (10) e16222
- 22 Fiske A, Henningsen P, Buyx A. Your Robot Therapist Will See You Now: Ethical Implications of Embodied Artificial Intelligence in Psychiatry, Psychology, and Psychotherapy. J Med Internet Res 2019; 21 (05) e13216
- 23 Antonio MG, Petrovskaya O, Lau F. Is research on patient portals attuned to health equity? A scoping review. J Am Med Inform Assoc 2019; 26 (8-9): 871-83