Data protection and consent to biomedical research: a step forward?

作者: Edward S Dove , David Townend , Bartha M Knoppers

DOI: 10.1016/S0140-6736(14)61488-4

关键词: LegislatureData Protection Act 1998Free movementEuropean unionLibrary sciencePolitical scienceParliamentGeneral Data Protection Regulation

摘要: 1 European Parliament. Legislative resolution of 12 March 2014 on the proposal for a regulation Parliament and Council protection individuals with regard to processing personal data free movement such (General Data Protection Regulation). 12, 2014. http://www.europarl.europa.eu/ sides/getDoc.do?pubRef=-//EP//TEXT+TA+P7TA-2014-0212+0+DOC+XML+V0//EN (accessed Aug 21, 2014). 2 Casali PG. Risks new EU regulation: an ESMO position paper endorsed by oncology community. Ann Oncol 2014; 25: 1458–61. 3 Di Iorio CT, Carinci F, Oderkirk J. Health research systems’ governance are at risk: should right override health? J Med Ethics 40: 488–92. 4 Ploem MC, Essink-Bot ML, Stronks K. Proposed is threat medical research. BMJ 2013; 346: f3534. 5 McCall B. supports reforms. Lancet 383: 1115. 6 Mascalzoni D, Knoppers BM, Ayme S, et al. Rare diseases now rare data? Nat Rev Genet 14: 372. 7 Protecting health scientifi c in Regulation (2012/0011(COD)): Position non-commercial organisations academics– July http://www.wellcome. ac.uk/stellent/groups/corporatesite/@ policy_communications/documents/web_ document/WTP055584.pdf 7, 8 Union. Proposal June 30, http://register.consilium. europa.eu/doc/srv?l=EN&f=ST%2011028%2

参考文章(5)
M. C. Ploem, M. L. Essink-Bot, K. Stronks, Proposed EU data protection regulation is a threat to medical research BMJ. ,vol. 346, ,(2013) , 10.1136/BMJ.F3534
Deborah Mascalzoni, Bartha Maria Knoppers, Ségolène Aymé, Matteo Macilotti, Hugh Dawkins, Simon Woods, Mats G. Hansson, Rare diseases and now rare data Nature Reviews Genetics. ,vol. 14, pp. 372- 372 ,(2013) , 10.1038/NRG3494
C T Di Iorio, F Carinci, J Oderkirk, Health research and systems’ governance are at risk: should the right to data protection override health? Journal of Medical Ethics. ,vol. 40, pp. 488- 492 ,(2014) , 10.1136/MEDETHICS-2013-101603
Becky McCall, European Parliament supports data protection reforms The Lancet. ,vol. 383, pp. 1115- ,(2014) , 10.1016/S0140-6736(14)60231-2