title: 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.
authors.affiliation: Laboratoire d'Ethique Médicale et Médecine Légale, Faculté de médecine de Paris Descartes, 45 rue des Saints-Pères, Paris 75006, France. sandra.franrenet@gmail.com
authors.forename: Sandra
authors.initials: S
authors.lastname: Franrenet
authors.forename: Nathalie
authors.initials: N
authors.lastname: Duchange
authors.forename: Fréderic
authors.initials: F
authors.lastname: Galactéros
authors.forename: Catherine
authors.initials: C
authors.lastname: Quantin
authors.forename: Olivier
authors.initials: O
authors.lastname: Cohen
authors.forename: Ruben
authors.initials: R
authors.lastname: Nzouakou
authors.forename: Sophie
authors.initials: S
authors.lastname: Sudraud
authors.forename: Christian
authors.initials: C
authors.lastname: Hervé
authors.forename: Grégoire
authors.initials: G
authors.lastname: Moutel
mesh_terms: D000755:Anemia, Sickle Cell / Q000235:genetics*; D003219:Confidentiality; D003625:Data Collection / Q000379:methods; D030881:Disclosure; D004992:Ethics, Medical; D005190:Family; D006801:Humans; D016347:Medical Records Systems, Computerized / Q000941:ethics*; D028701:Patient Rights