The collection of familial data is an essential step for community genetics programs or genetic research.
Ethical issues concerning privacy and confidentiality present a major challenge in such programs.
In order to keep familial data confidential, we have developed a family-based numerical coding procedure which allows the use of confidential data and the determination of familial relationships without risk of disclosure.
This procedure is composed of two parts : the physical separation of identifying information and individual data ; and the use of a code containing all the information required to build family trees.
This procedure has been used in Eastern Quebec since 1995, mainly for screening, genetic counseling, research on familial dyslipidemias, public health intervention, and research projects on the genetics of complex traits, such as arterial hypertension and coronary artery disease.
Mots-clés Pascal : Confidentialité, Etude familiale, Génétique, Code, Base donnée, Ethique
Mots-clés Pascal anglais : Confidentiality, Family study, Genetics, Code, Database, Ethics
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 99-0273593
Code Inist : 002B30A09. Création : 16/11/1999.