| Archives of Public Health | |
| Ethics, privacy and the legal framework governing medical data: opportunities or threats for biomedical and public health research? | |
| Yves Coppieters1  Alain Levêque1  | |
| [1] Research centre in epidemiology, biostatistics and clinical trials, School of Public Health, Université Libre de Bruxelles (ULB), Route de Lennik 808, CP 596, 1070, Brussels, Belgium | |
| 关键词: Data analysis; Ethical considerations; Medical data; Privacy; | |
| Others : 790825 DOI : 10.1186/0778-7367-71-15 |
|
| received in 2012-12-26, accepted in 2013-06-07, 发布年份 2013 | |
PDF
|
|
【 摘 要 】
Privacy is an important concern in any research programme that deals with personal medical data. In recent years, ethics and privacy have become key considerations when conducting any form of scientific research that involves personal data. These issues are now addressed in healthcare professional training programmes. Indeed, ethics, legal frameworks and privacy are often the subject of much confusion in discussions among healthcare professionals. They tend to group these different concepts under the same heading and delegate responsibility for “ethical” approval of their research programmes to ethics committees. Public health researchers therefore need to ask questions about how changes to legal frameworks and ethical codes governing privacy in the use of personal medical data are to be applied in practice. What types of data do these laws and codes cover? Who is involved? What restrictions and requirements apply to any research programme that involves medical data?
【 授权许可】
2013 Coppieters and Levêque; licensee BioMed Central Ltd.
【 预 览 】
| Files | Size | Format | View |
|---|---|---|---|
| 20140705004159921.pdf | 154KB |
【 参考文献 】
- [1]Hanwella R, de Silva V: Access to information is crucial for science. Lancet 2011, 377(9775):1404.
- [2]Hawken SJ, Henning MA, Pinnock R, Shulruf B, Bagg W: Clinical teachers working in primary care: what would they like changed in the medical school? J Prim Health Care 2011, 3(4):298-306.
- [3]The Council of European Union: Council framework decision 2008/977/JHA of 27 November 2008 on the protection of personal data processed in the framework of police and judicial cooperation in criminal matters. Off J Eur Union 2008, 350:60. 71
- [4]Council of Europe: Recommendation N° R (97) 18 and explanatory memorandum of the Committee of ministers to member states concerning the protection of personal data collected and processed for statistical purposes (adopted by the Committee of Ministers on 30 September 1997 at the 602nd meeting of the Ministers Deputies). The Council of European Union; 1997. http://www.coe.int webcite
- [5]Hampikian G, Meslin EM: Law, bioethics and the current status of ownership, privacy, informed consent in the genomic age. Pac Symp Biocomput 2012, 17:441. http://psb.stanford.edu/psb-online/proceedings/psb12 webcite
- [6]Commission for the protection of privacy: Comment appliquer la loi vie privée dans la recherche biomédicale?. Brussels: CPVP, D/2011/11.746/2; 2011:16. http://www.privacycommission.be webcite
- [7]Carinci F, Di Iorio CT, Ricciardi W, Klazinga N, Verschuuren M: Revision of the European Data Protection Directive: opportunity or threat for public health monitoring? Eur J Public Health 2011, 21(6):684-5.
- [8]Stenbeck M, Allebeck P: Do the planned changes to European data protection threaten or facilitate important health research? Eur J Public Health 2011, 21(6):682-3.
- [9]Cols F, Doumont D, Lammens L, Ingenbleek A, Coppieters Y, Deboosere P, D’hoore W, Levêque A: Privacy and integration of heath data. Brussels: Belgian Science Policy Office, Project BeLHIS, AGORA AG/JJ/139; 2010. (http://www.belspo.be webcite)
- [10]Maisonneuve H, Matillon Y, Bertrand D: Obstacles to health information for all. Lancet 2004, 364(9447):1755.
- [11]Bialobrzeski A, Ried J, Dabrock P: Privacy revisited? Old ideals, new realities, and their impact on biobank regimes. Poiesis Prax 2011, 8(1):9-24.
- [12]El Emam K, Jonker E, Arbuckle L, Malin B: A systematic review of re-identification attacks on health data. PLoS One 2011, 6(12):e28071.
- [13]Hakulinen T, Arbyn M, Brewster DH, Coebergh JW, Coleman MP, Crocetti E, Forman D, Gissler M, Katalinic A, Luostarinen T, Pukkala E, Rahu M, Storm H, Sund R, Törnberg S, Tryggvadottir L: Harmonization may be counterproductive–at least for parts of Europe where public health research operates effectively. Eur J Public Health 2011, 21(6):686-7.
PDF