Skip to Main content Skip to Navigation
Journal articles

Ethical issues related to computerised family medical histories in sickle cell disease: Inforare.

Abstract : 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 committee and formalized in the patients' information letter: educating patients to aid the recruitment of family members, rules of confidentiality and the disclosure of aggregate, individual and unexpected research results. This paper presents the main issues addressed.
Document type :
Journal articles
Complete list of metadatas

https://www.hal.inserm.fr/inserm-00612293
Contributor : Nathalie Duchange <>
Submitted on : Thursday, July 28, 2011 - 3:53:28 PM
Last modification on : Wednesday, August 19, 2020 - 11:16:35 AM

Links full text

Identifiers

Citation

Sandra Franrenet, Nathalie Duchange, Fréderic Galactéros, Catherine Quantin, Olivier Cohen, et al.. Ethical issues related to computerised family medical histories in sickle cell disease: Inforare.. Journal of Medical Ethics, BMJ Publishing Group, 2010, 36 (10), pp.604-7. ⟨10.1136/jme.2009.034066⟩. ⟨inserm-00612293⟩

Share

Metrics

Record views

519