Aicardi, Christine, Del Savio, Lorenzo, Dove, Edward, Lucivero, Federica, Tempini, Niccolò and Prainsack, Barbara (2016) Emerging ethical issues regarding digital health data. On the World Medical Association Draft Declaration on Ethical Considerations Regarding Health Databases and Biobanks. Croatian Medical Journal, 57 (2). pp. 207-213. ISSN 0353-9504
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Abstract
Throughout many parts of the world, biomedical research ethics is based on a core body of well-established norms, rules, and principles, including the Declaration of Helsinki, the Nuremberg Code, the Belmont Report, and the International Ethical Guidelines for Biomedical Research Involving Human Subjects (1). The overarching goal of these codifications is to protect people against harms arising from research, and from researchers experimenting on them without their knowledge and permission.
More recently, and because of the increasing technological capabilities for digital data production, storage, and analysis (such as web and ubiquitous computing, wearables, apps), new opportunities for conducting biomedical research have emerged. Data-intensive approaches in biomedicine, made possible by the increasing availability of digital health data and biobanks, are profoundly changing the ways in which research is conducted, and the role of research participants and health care (2-4). Physical contact between researchers and study participants is no longer needed and, once collected and stored, participants’ data remain available for potential reuse in further research for various purposes. With the growth of data-intensive approaches in biomedical research, a rich discussion on the saliency of moral considerations pertaining to the management of personal data in health databases and biobanks has unfolded (5).
Item Type: | Article |
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Keywords: | ethical issues; digital health data; World Medical Association; Draft Declaration; Ethical Considerations; Health Databases; Biobanks; |
Academic Unit: | Assisting Living & Learning,ALL institute Faculty of Social Sciences > Law |
Item ID: | 19939 |
Identification Number: | 10.3325/cmj.2016.57.207 |
Depositing User: | Edward Dove |
Date Deposited: | 03 Jun 2025 15:26 |
Journal or Publication Title: | Croatian Medical Journal |
Publisher: | University of Zagreb |
Refereed: | Yes |
Related URLs: | |
URI: | https://mural.maynoothuniversity.ie/id/eprint/19939 |
Use Licence: | This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here |
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