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Tag archives for protection-laws

This paper challenges the argument that data protection legislation may harm research by unduly restricting the flow of personal health information. I unpack the assumption that privacy is an individual right that must give way to research as a social good, and explore how data protection laws facilitate the flow of information for research purposes. I conclude that researchers should embrace data protection laws because they help construct trust in research practices, mitigate the commercial imperatives that flow from the fact that research is a public-private enterprise and protect the accuracy of data. Good research design should recognize that privacy is a social value and an essential element of psychological health and social relationships. And since research databases do not exist in isolation, researchers must respect the fact that the non-consensual flow of information poses risks of harm, including the secondary use of health research databases for social control, that must be managed. [To view the French abstract, please scroll down.]

Data protection laws offer such broad exemptions for research that research ethics boards and data custodians lack sufficient guidance as to when it may be acceptable to release data to researchers without consent. The result: idiosyncratic institutional policies that create major challenges for researchers conducting multi-centred studies. The 2005 CIHR Best Practices for Protecting Privacy in Health Research provide an important first step towards greater clarity. However, there is still a need to translate these Best Practices into harmonized policies. This should be seen as an opportunity rather than a threat. Clear rules for data protection will reinforce public trust, which is essential for continued access to personal information for research. [To view the French abstract, please scroll down.]

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