Guidelines for Genetic Testing of Children
In most cases, what the guidelines imply is: Slow down.
- Always put the best interests of the child first
- Make testing decisions with the benefit of expert counseling
- Avoid testing minors for adult-onset diseases
- Do not use commercial direct-to-consumer (DTC) tests for children
In addition to the policy statement (abstract here, links to pdf) published in Pediatrics, a "Technical report: ethical and policy issues in genetic testing and screening of children" appears in Genetics in Medicine (full text, links to pdf). It places the recommendations in several contexts, including historical, medical, psychological, legal, commercial and ethical. It's good on spelling out the various possible benefits and harms of, for instance, testing for adult-onset conditions; and it appropriately discusses such concerns as misdiagnosis and the discovery of misattributed parentage. It's a valuable background document.
Of course, there are not enough counselors, and too many physicians have inadequate training in genetics; the guidelines rather wave this away by encouraging education and saying that counseling can be given by any "health care provider with appropriate training and expertise." (The PHG Foundation calls this a "refreshingly pragmatic approach.") And it's certainly a problem that "only a few DTC companies specify that their websites are not directed to children" (Technical Report, p. 8, citing a 2010 paper [pdf]).
What can we expect from the DTC industry? Based on past experience, there is a disturbing possibility that some companies will use these guidelines – which have rightly been described as aiming to "put the brakes on testing children" – in a perverse way, as part of a push to increase testing. The pitch would go something like this: Sometimes testing is appropriate, say the AAP and ACMG, and you of course are a well-informed parent; your case must be one of the exceptions, even if the fine print suggests it's not. We've already seen some of that dynamic in prenatal tests, where the company websites display guidelines that, read carefully, suggest their customers should not use the product.
Headlines such as "Experts issue guidelines for gene tests in kids" (Reuters, Chicago Tribune, and others) and the like (Time) reinforce the wrong message. Prefixing it with "The DNA Dilemma" (Parade) helps a little, as does "Questions raised about genetic testing in children," which the Boston Globe used on Monday. Better yet is the Globe's first take, the previous Thursday:
Physician organizations recommend against genetic testing for childrenNow, that's a good starting point for discussion.
Previously on Biopolitical Times: