1. Objectifs

Intentions :
« 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. This paper examines the commonality and differences between the positions taken in order to discern general trends. Practical frameworks to guide physicians for resolving ‘difficult’ situations are proposed. » (p. 104)

2. Méthode

Échantillon/Matériau :
« We analyzed 62 guidelines produced by 42 different developers. Of the guidelines examined, seven were produced by international organizations (HUGO, UNESCO, WHO, WMA), eight by regional bodies (Council of Europe, European Parliament, GAEIB, HGSA), and 47 by national instances (Australia, Austria, Canada, Denmark, France, Germany, Japan, Switzerland, The Netherlands, UK, USA). » (p. 104)

Instruments :
« We made a structured review of guidelines published from 1987 through April 2004 identified by a PUBMED, HUMGEN as well as global Internet search using the following terms: duty, warn, disclosure, notification, guidelines, statement, position paper, protocol, recommendations, opinion, policy, genetic, testing, confidentiality, family members and relatives. » (p. 104)

Type de traitement des données :
Recension d’écrits

3. Résumé

« 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. » (p. 103)