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The Inforare project aims to set up a system for the sharing of clinical and familial data, in order to study how genes are related to the severity of sickle cell disease. While the computerisation of clinical records represents a valuable research goal, an ethical framework is necessary to guarantee patients' protection and their rights in this developing field. Issues relating to patient information during the Inforare study were analysed by the steering committee. Several major concerns were discussed by the (...) |
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The American Journal of Bioethics, Volume 12, Issue 10, Page 20-22, October 2012. |
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The American Journal of Bioethics, Volume 12, Issue 10, Page 18-20, October 2012. |
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