Informing relatives of their genetic risk: an examination of the Belgian legal context

Abstract

Findings from genomic sequencing can have important implications for patients and relatives. For this reason, most professional guidelines support that patients have an ethical duty to inform relatives and, when disclosure does not occur, most guidelines allow health-care professionals (HCPs) to breach confidentiality. Translating the ethical duties to respect the patient’s confidentiality and prevent harm in at-risk relatives into legislation is a complex issue due to the both personal and familial nature of genetic information. In many countries there is no specific guideline or law addressing family communication of genetic information and thus it is unclear what duties patients and HCPs have towards at-risk relatives. Using Belgium as an example for countries in which this is the case, we examined the existing Belgian legislation in relation to three central topics: (1) patients’ duties to family members, (2) respect for patient confidentiality and privacy, and (3) HCPs’ duties to family members. We then investigated international legal frameworks and compared it with the Belgian context to see to what degree international precedent could aid in the interpretation of Belgian law. Based on our review of the legislation, we make recommendations for the interpretation of current law and examine whether there is sufficient legal precedent to answer the questions central to family communication of genetic information. Although we focus on the specific Belgian legislation, the discussions are relevant for many other countries that have similar legislative approaches.