RT Journal Article
SR Electronic
T1 Ethical issues related to computerised family medical histories in sickle cell disease: Inforare
JF Journal of Medical Ethics
JO J Med Ethics
FD BMJ Publishing Group Ltd and Institute of Medical Ethics
SP 604
OP 607
DO 10.1136/jme.2009.034066
VO 36
IS 10
A1 Sandra Franrenet
A1 Nathalie Duchange
A1 Fréderic Galactéros
A1 Catherine Quantin
A1 Olivier Cohen
A1 Ruben Nzouakou
A1 Sophie Sudraud
A1 Christian Hervé
A1 Grégoire Moutel
YR 2010
UL http://jme.bmj.com/content/36/10/604.abstract
AB 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 formalised 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.