Commentary: Save the Children: Direct-to-Consumer Testing of Children is Premature, Even for Research

While I am in agreement with Tarini, Tercyak, and Wilfond (2011) about the need for more research on children and genetic testing, I strongly object to their main point, which is that this research should include studies of children’s involvement in direct-to-consumer genomic testing (DTC GT). I believe that this recommendation is premature. Having children undergo DTC GT now would expose them to a poorly regulated industry which often markets itself unreasonably (Federal Trade Commission, 2006) and provides information of highly variable accuracy with little or no established clinical validity (European Society of Human Genetics, 2011b; Robson, Storm, Weitzel, Wollins, & Offit, 2010). DTC GT testing occurs in the absence of involvement of the children or their parents with physicians and, often, with little or no genetic counseling before or after testing. While genomic testing offers great promise for the future, it seems unreasonable currently that medical decision making for children should be based on information available in DTC GT. Having children undergo DTC GT would, as the authors acknowledge, also be in contradiction to many professional guidelines about genetic testing (American Medical Association, 1996; ASHG and ACMG, 1995; Bioethics Committee, Canadian Paediatric Society [CPS], Ethical and Public Policy Committee, Canadian College of Medical Geneticists, 2003, reaffirmed January 2011; British Society of Human Genetics, 2010; European Society of Human Genetics, 2009). It would deprive children of their autonomous right to decide as adults (when, presumably, genomic testing will be much improved) whether or not to learn this genetic information about themselves. It is also, I believe, difficult for the best interests of the child to be adequately considered in the circumstance of DTC GT without a medical intermediary to weigh the complicated risks and benefits of testing for over a hundred genetic conditions (as most DTC tests include) and with results of highly variable levels of accuracy, including many for which the predictive utility is currently unknown. Tarini et al. (2011) give weight to the fact that many parents are interested in knowing their children’s genetic risk for many conditions, especially those which run in their own family. This is true, but parental interest is not necessarily in the best interests of the child; parents often want testing of their child even in the absence of medical benefit to the child (Patenaude, Basili, Fairclough, & Li, 1996). It would be critical to have a neutral professional like the child’s pediatrician involved to decide if the testing was actually sought to reduce parental anxiety, guilt or curiosity or whether it would be truly likely to benefit the child. The many professional guidelines which have set the age of majority as the minimal recommended age for genetic testing of a child except in cases where there was imminent medical benefit have reiterated that parental interest, which eliminates the future option of not knowing for the tested individual, is insufficient reason for childhood testing. At-risk adults, even those within the same family, differ enormously in whether or not they want to have genetic testing, at what points and ages they seek testing, and with whom they share the information with. Such autonomous actions seem important both psychologically and ethically to preserve. While the authors suggest the