Avis n°88 - La communication du statut de porteur dans le cadre du dépistage néonatal en Fédération Wallonie Bruxelles  

Avis n°88 du 10 novembre 2025 concernant la communication du statut de porteur dans le cadre du dépistage néonatal en Fédération Wallonie Bruxelles.

Neonatal screening aims to detect serious but treatable diseases early in order to prevent irreversible harm in newborns. In the Wallonia Brussels Federation, the inclusion of sickle cell disease in the screening programme has raised the question of whether parents should be informed when screening identifies a child as a genetic carrier without being affected by the disease.

The Belgian Advisory Committee on Bioethics examined this issue from medical, legal, ethical, and societal perspectives. While carrier status is not a disease, it may have clinical relevance in certain situations, contribute to family prevention, and inform future reproductive choices. However, automatic or poorly framed disclosure may cause anxiety, misunderstanding, stigmatisation, or undermine the child’s right to an open future.

The Committee recommends recognising a right of access to information on carrier status, without imposing systematic disclosure. Parents should be informed of the existence of this information and the possibility to access it. A progressive, supported, and harmonised approach is advocated, based on secure data storage, contextualised communication, and strengthened access to genetic counselling.

Opinion by letter No 12 - Neonatal screening to detect spinal muscular atrophy

Opinion by letter No 12 of 21 March 2022 from the Advisory Committee on Bioethics of Belgium concerning the free and informed consent of parents during the extension of neonatal screening to detect spinal muscular atrophy (SMA).

Opinion No 25 - Screening of congenital metabolic disorders.

Opinion No 25 of 17 November 2003 from the Advisory Committee on Bioethics of Belgium concerning the retention period of blood records and the confidentiality of data related to the screening of congenital metabolic disorders.