What is the ethical stance regarding genetic testing for untreatable adult-onset conditions in minors?

• A. Always test to inform families.
• B. Never test minors at all.
• C. Test only if there is immediate treatment.
• D. Defer testing to preserve future autonomy.

Answer: (D)

Deferring testing to preserve future autonomy is the guiding stance when a genetic finding would reveal information about an untreatable adult-onset condition in a child. Since there’s no medical benefit to knowing this in childhood, testing now would intrude on the child’s future ability to decide what they want to know about their own genome. It can create psychological distress, shape life plans, influence self-identity, and expose the child to potential discrimination or stigma long before they can consent or meaningfully act on the information. By waiting until they reach adulthood, the individual can choose whether or not to learn and act on that information with full autonomy. Exceptions would apply if there were a proven, beneficial intervention or prevention available in childhood, but for untreatable adult-onset conditions, the ethical choice is to defer.