Governance of research that uses identifiable personal data
نویسندگان
چکیده
منابع مشابه
Secondary Uses of Personal Data for Population Research
In genomic research, cohort and large-scale population studies are proliferating along with accompanying infrastructures (databases and biobanks). Population-based research links samples and data from multiple sources often obtained for other purposes. The normative frameworks of many countries are largely based on 1980 OECD principles which limit the uses of personal data, especially for secon...
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Technological advances in the quality, availability and linkage potential of health data for research make the need to develop robust and effective information governance mechanisms more pressing than ever before; they also lead us to question the utility of governance devices used hitherto such as consent and anonymisation. This article assesses and advocates a principles-based approach, contr...
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n the early 1990s, an expert group chaired by Professor Anthony Culyer, was commissioned by the government to report on the state of research and development (R&D) within the National Health Service (NHS) in the UK, and to make recommendations which would secure and strengthen its future. His report, published in 1994, drew important conclusions which have had a far reaching effect on R&D withi...
متن کاملUsing patient-identifiable data for observational research and audit.
Across the world rapid changes in the law, technology, and society are reshaping the way identifiable information about patients is handled. In Britain, doctors’ longstanding common law duty of confidentiality to their patients has been supplemented by restrictions on processing electronic and paper based records in the Data Protection Act 1998, which came into force on 1 March 2000. This month...
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the ones I most often use, but when I’m conscious of a consultation going wrong, the problem usually lies deeper. You only have to ask: ‘Do I give patients who irritate me a worse deal?’ to appreciate the importance of attitudes in human communication. But do attitudes determine skills, or can attitudes be forged by attention to skills? It’s an ancient debate, neatly articulated by Skelton. Inn...
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ژورنال
عنوان ژورنال: BMJ
سال: 2006
ISSN: 0959-8138,1468-5833
DOI: 10.1136/bmj.333.7563.315