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. That is because a. the results of genetic tests have implications for other family members b. genetic testing can be associated with risks (for example of being declined insurance, or of psychological distress) and c. genetic testing may not have direct medical benefit (for example, it often will not lead to any change in medical treatment).

But while consent is important to seek, and is usually going to be required, it seems that in some circumstances it could be ethical to perform genetic testing against parents’ wishes. We could think of these in three groups

  1. Providing treatment in the best interests of a child

Sometimes genetic testing may allow doctors to confidently identify treatment that would benefit a child. For example, such testing might detect a rare metabolic disorder causing seizures that would respond to a particular vitamin or nutritional supplement. In the absence of a genetic diagnosis, it might be possible to try different treatments to see if any of them work. But there could be a long delay before the right treatment is found. Where the various treatments have side effects, the child would potentially experience more side effects because they do not have a confirmed diagnosis. To work out then, whether testing is ethical without consent, we would need to know how likely it is that a diagnosis would be found, and how harmful it would be to simply try different possible treatments.

  1. Avoiding treatment not in the best interests of a child

One reason why doctors may be recommending genetic testing for Jonas is because of a suspicion that he has a major genetic or chromosomal that is likely to lead to death regardless of medical treatment. Identifying such an abnormality might lead doctors to regard further treatment as futile. If so, there would be a concern that in the absence of testing, Jonas may be harmed by painful or uncomfortable treatment that is not likely to benefit him.

To determine whether it could be ethical in this situation to perform testing against parents’ wishes we should compare the confidence of doctors in withdrawing treatment with or without the genetic test. It may be that particular genetic test results would make doctors much more pessimistic about the future. Yet, often it will still be difficult to be completely dogmatic, and doctors may be still prepared to continue treatment.

Other conditions, though might lead to a high degree of confidence about early death, to more confident counseling of parents, and, if necessary to earlier involvement of legal processes in the event of ongoing disagreement.

  1. Consideration of resources

Jonas’ parents appear to be concerned that he would be denied treatment if he had a genetic diagnosis. They might be concerned, in particular, that he would be denied costly treatment.

But resource considerations might be relevant to providing treatment as well as declining treatment for Jonas. Some highly expensive medical treatments may only be cost-effective in individuals with a particular genetic abnormality, or who lack it. Identifying a gene in Jonas (or the absence of an abnormality) might mean that he is eligible for a particular treatment that would otherwise be unavailable.

 

The above scenarios are an incomplete list. Even if there are situations where genetic testing of a child against parental refusal would be ethical, there is a further question of how such testing should proceed. For example, would a court order be necessary? Furthermore, even if it were permissible in individual cases, there is a further question about the broader impact of going against parents’ wishes in this way. There is considerable interest in the use of genomic tests as part of newborn screening. The issues in declining screening tests are slightly different from the situation in intensive care, as the chance of benefit to an individual child is much lower. Nevertheless, if such screening is valuable, and if it is to achieve political and social acceptance, it may be better to allow a small number of parents to decline genetic testing for their child.

 

 

  1. This case is hypothetical.
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2 Responses to Gene-free: Can parents refuse genetic testing for their child?

  • Mary Anne Ryan says:

    To go against parental wishes places the burden of proof on the shoulders of neonatologist #bias, # nudge parents in one direction without fully informed, # right to open future for all family members..

  • Paul Treanor says:

    Entirely missing here is the impact on third parties. To be sure, the example at the start is of a child with serious congenital abnormalities, and genetic tests which might affect treatment. Doctor’s problems, very medical. But then the article switches to the general principle of whether genetic testing can be performed against parents wishes, and that is a much more controversial issue.

    What if the child is genetically gay and the government wants to test for that? If the policies are well-intentioned, do the parents have the right to refuse testing? And what if the parents are aggressively homophobic – can they be trusted with a gay child? Of course there is no ‘gay test’ yet, but we can be sure that in the coming decades tests will be marketed for all sorts of politically and socially sensitive genetic markers. This article does not address their impact.

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