Guidelines for disclosing genetic information to family members: from development to use.
This paper presents the existing legal frameworks, professional guidelines and other documents related to the conditions and extent of the disclosure of genetic information by physicians to at-risk family members. Although the duty of a physician regarding disclosure of genetic information to a patient's relatives has only been addressed by few legal cases, courts have found such a duty under some circumstances. Generally, disclosure should not be permitted without the patient's consent. Yet, due to the nature of genetic information, exceptions are foreseen, where treatment and prevention are available. This duty to warn a patient's relative is also supported by some professional and policy organizations that have addressed the issue. Practice guidelines with a communication and intervention plan are emerging, providing physicians with tools that allow them to assist patients in their communication with relatives without jeopardizing their professional liability. Since guidelines aim to improve the appropriateness of medical practice and consequently to better serve the interests of patients, it is important to determine to what degree they document the 'best practice' standards. Such an analysis is an essential step to evaluate the different approaches permitting the disclosure of genetic information to family members.
Godard
Béatrice
B
Programmes de bioéthique, Université de Montréal, C.P. 6128, succ. Centre-ville, H3C 3J7, Montréal, QC, Canada. beatrice.goard@umontreal.ca
Hurlimann
Thierry
T
Letendre
Martin
M
Egalité
Nathalie
N
D002170:Canada; D005260:Female; D020022:Genetic Predisposition to Disease / Q000453:epidemiology*; D030661:Genetic Privacy; D005820:Genetic Testing / Q000592:standards; D006801:Humans; D008297:Male; D009386:Neoplastic Syndromes, Hereditary / Q000175:diagnosis / Q000235:genetics*; D028701:Patient Rights; D010375:Pedigree; D017410:Practice Guidelines as Topic; D014342:Truth Disclosure