PT  - JOURNAL ARTICLE
AU  - Sandra Franrenet
AU  - Nathalie Duchange
AU  - Fréderic Galactéros
AU  - Catherine Quantin
AU  - Olivier Cohen
AU  - Ruben Nzouakou
AU  - Sophie Sudraud
AU  - Christian Hervé
AU  - Grégoire Moutel
TI  - Ethical issues related to computerised family medical histories in sickle cell disease: Inforare
AID  - 10.1136/jme.2009.034066
DP  - 2010 Oct 01
TA  - Journal of Medical Ethics
PG  - 604--607
VI  - 36
IP  - 10
4099  - http://jme.bmj.com/content/36/10/604.short
4100  - http://jme.bmj.com/content/36/10/604.full
SO  - J Med Ethics2010 Oct 01; 36
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.