Communicating genetic risk in the family: ethical challenges and policy approaches

Korte inhoud:Identification of a genetic condition in a patient can have implications for other family members who may be at risk of developing the condition, or at risk of passing the condition on to their offspring. Informing relatives of these risks means they have the option to undergo early screening, prevention, treatment, or utilize reproductive technologies and thus can have significantly improved health outcomes for themselves and their future children. When a patient does not inform their relatives of the genetic risk in the family, the patient's right to autonomy and confidentiality can come into conflict with the interests of their at-risk relatives, creating an ethical challenge for all stakeholders. The overall aim of this project is to better understand the complex ethical challenges that arise when communicating genetic risk in the family, and to explore the impact of both guidelines and policies on clinical practice and clinician perspectives. The specific objectives of the project are (1) providing an overview of the ethical landscape with regards to the communication of genetic information and the duties of health care professionals in this context; (2) understanding the legal duties of patients and clinicians towards at-risk relatives; (3) analyzing how clinical genomic sequencing consent forms address communicating genetic risk information to family members; (4) assessing attitudes of the general population towards family communication practices and policies; (5) assessing attitudes of clinicians towards policy approaches to cases of nondisclosure; (6) developing points to consider for clinicians and policymakers regarding results with familial consequences and cases of nondisclosure. To meet these objectives, we utilized a variety of methods to provide an in depth and nuanced analysis of the ethics of communicating genetic risk in families, namely: a systematic review of normative documents, an analysis of Belgian and international legislation, an analysis of clinical consent forms for genomic sequencing, a survey of the general public, and interviews with clinicians. Based on our research, we developed points to consider for policymakers and clinicians to reduce cases of nondisclosure. We make recommendations regarding the development of policy approaches to nondisclosure that balance the interests of patients, at-risk relatives, and clinicians, while also accounting for limitations caused by resources and organization the broader health care context.

Jaar van publicatie:2023

Toegankelijkheid:Closed