Many diseases that show symptoms during infancy, childhood or adolescence (such as cystic fibrosis, Duchenne muscular dystrophy or Down syndrome) have a genetic basis. Genetic testing can play an important role in reaching an accurate diagnosis and enabling early treatment, care and support.
Early diagnosis may improve health outcomes, help families better understand a condition, and support access to appropriate medical and social services.
Children cannot give informed consent for genetic testing or for any follow-up interventions that may result from it. Therefore, their parents or legal guardians make decisions on their behalf. Even though these decisions are made with a child’s wellbeing in mind, they can have long-term implications for a child’s future autonomy and right to privacy. As children grow older, they may not want to know certain genetic information, or they may feel that early testing has shaped their life choices in ways they did not choose themselves. Potential impacts include stigma, psychological distress or changes in family relationships.
These situations raise important ethical questions. How should current health needs be balanced against future interests? How can a child’s wellbeing be weighed alongside the needs and concerns of the family? When and to what extent should children be involved in decisions about genetic testing as they grow older?
Addressing these questions requires careful consideration of parental responsibility, the limits of decision-making on behalf of a child and the gradual development of a child’s capacity for autonomy.
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