Bioethics Blogs

Gene-free: Can parents refuse genetic testing for their child?

by Dominic Wilkinson @Neonatalethics

A critically ill infant in intensive care (let us call him Jonas) has serious congenital abnormalities affecting his liver and brain.1 Doctors looking after Jonas suspect that he may have a major genetic problem. They have recommended testing for Jonas, to help determine whether he does have this problem.

However, Jonas’ parents have refused consent for the genetic test. They are concerned that the test could be used to discriminate against Jonas and against them; they have repeatedly indicated that they will not agree to it being performed.

Could it ever be ethical to perform genetic testing on a child against parental wishes?

One reason for asking this question is because of the increasing sophistication and availability of genetic tests for newborn infants. As I have outlined in a recent paper, the era of ‘genomic intensive care’ is fast approaching. But there are a range of concerns that parents might have about genetic tests, including those mentioned by Jonas’ parents – it is conceivable that some parents will decline testing.

Currently, there are strong norms around genetic testing both in adults and children. Consent is usually felt to be critically important for testing. For example the American Society of Human Genetics guidelines state that

The provider should obtain the permission of the parents and, as appropriate, the assent of the child or consent of the adolescent”

Although other medical tests might be done without specific explicit consent (particularly in an intensive care unit), genetic testing is thought to be different.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.