A growing number of parents are getting their children genetically tested to find out their kids’ risk for developing potentially devastating diseases.
Genetic sequencing tests are already being used to diagnose children with rare diseases, especially neurodevelopmental disorders.
But which results from these genetic tests should pediatricians give to parents and patients, and how should the patient’s family be involved?
To help doctors make these decisions, a group of ethicists put together some guidelines, which were published Monday in the journal Pediatrics.
“One of the great advantages of genome sequencing is that it gives answers to people who have spent years looking for a diagnosis for their children with developmental disorders,” Laurence McCullough, a medical ethicist at Baylor College of Medicine, who led the group that developed the guidelines, said in a statement.
But the genetic results are often complex, and doctors should discuss this with parents before they decide to have their children tested.
The new guidelines call for doctors to explain to the patients and their parents
- what the proposed test is
- how complex the test is
- what kind of results to expect
- other secondary or incidental information (which isn’t related to the test, but might still be useful) the test could reveal
When deciding to go through with the testing, doctors should abide by three core ethical standards, according to the report. First, they should consider the best interests of the child; second, they should consider the decision of the parent or legal guardian; and third, the consent of the child.
Before a child has their genome sequenced, doctors should make sure they have the consent of the parents and of the child, if he or she is a mature adolescent, the ethicists wrote in their report.
Once the test has been performed, doctors should decide which information to share with parents and patients, and which to withhold.
“There is no need to get parents caught up in the detail that might have no meaning at all and that cannot be decoded at this time,” the report’s authors said.
In addition to medical labs, a number of commercial companies offer genome sequencing services. The Mountain View, California-based company 23andMe will sequence a portion of your DNA to provide information about your ancestry, but is not currently allowed to provide information about disease risks, after the FDA ruled the tests were not approved for this purpose.
Nevertheless, genetic information is something we’re increasingly having to grapple with, as we gain the ability to not only to read our genetic code, but also modify it.
This technology — which has already been used on non-surviving human embryos — could lead to new treatments for diseases.
But the first step is giving people the tools to understand what their child’s DNA means.