Guidelines for Disclosing Genetic Information to Family Members: From Development to Use

Abstract

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.

Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information

“…It also excludes studies of or theories on direct communication with family members by health professionals, 1,2 considering that this was addressed in another review. 3,4 Instead, we concentrate on experiences and theories that come strictly out of the familial context.…”

Communicating genetic information in families – a review of guidelines and position papers

“…5,6 This issue is well documented by research 7 -11 and a comprehensive review of guidelines has been published recently. Godard et al 12 categorises the guidelines into those requiring an individual's consent to inform family members, where 'exceptional circumstances' allow disclosure to family members, or where 'special considerations' can account for disclosure. 12 The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure also provides an overview of guidelines titled Professional disclosure of familial genetic information, which includes international, regional and national positions on health professionals disclosing genetic information to uninformed at-risk family members.…”

Das Gendiagnostikgesetz im Spannungsfeld von Humangenetik und Recht

“…Außerdem sollen der ratsuchenden Person bei psychischen und physischen Belastungen Möglichkeiten zur Unterstützung (z. B. psychosoziale, psychotherapeutische Beratung) angeboten werden (10,11,13,14,15,16). Gegebenenfalls soll auf für die Fragestellung relevante Selbsthilfeorganisationen und BeAnhang 2 152 hindertenverbände hingewiesen werden und -sofern möglich und von der betroffenen Person gewünscht -Kontakte vermittelt werden (5,6,11,17).…”

“…aus dem Beratungsgespräch Hinweise, dass genetische Verwandte der betroffenen Person Trägerinnen oder Träger der zu untersuchenden genetischen Eigenschaft sein können, sollten die genetisch Verwandten durch die ratsuchende Person auf die Möglichkeit einer genetischen Beratung hingewiesen werden; im Fall einer vermeidbaren oder behandelbaren Erkrankung bzw. gesundheitlichen Störung ist der betroffenen Person zu empfehlen, den Verwandten eine genetische Beratung zu empfehlen (9,14,18,19).…”