Refusing to provide a prenatal test: can it ever be ethical?

Contrary to Duncan and Foddy,¹ I would argue that clinicians who refuse a test in these circumstances are not being paternalistic, they are upholding the rights of a future child over the rights of parents. The right not to know a genetic diagnosis, or to decide for oneself when to have a diagnosis, is very important, particularly in cases where there is no cure for a condition.

Nor is it clear why parents may want this information to assist them in making a decision about whether to have more children. Symptoms of Huntington's disease develop in adulthood, not childhood, so the status of the child would not have implications for parenting. The status of one child has no implications for the status of any future child they may have. The implication is that the parents do not understand risk, or their other reproduction options.

Clinicians should explain carefully the grounds on which they take the decision to refuse testing, in the hope that parents will come to a similar view. There is always a risk of parents manipulating the system, just as there is with prohibition on social sex selection, but this is not a reason to relax ethical guidelines.

Paternalism is not always wrong, particularly when it comes to genetic information about future people: clinicians often forgo communicating information which they could obtain. We are not provided with genetic printouts at birth, nor are all the genetic characteristics of a fetus communicated to the potential parents. Long may it remain so.