Marginally Scientific? Genetic Testing of Children and Adolescents for Sports and Health Promotion

Timothy Caulfield, Pascal Borry, Maeghan Toews, Bernice Elger, Hank Greely, Amy McGuire

Direct-to-consumer (DTC) genetic testing has come under increased scrutiny in recent years with calls for policy reform and regulation. Much of the attention and concern surrounding this industry pertains to genetic testing services purporting to offer health-related genetic risk information to consumers such as predisposition to disease. As these policy debates continue to unfold it is important to recognize that there is a whole array of DTC testing products being marketed around the world that claim to offer genetic information related to everything from fitness and diet to athletic ability and personality traits. These genetic tests are also increasingly being offered by health care providers such as chiropractors, naturopaths and homeopaths, some of whom operate on the margins of scientific credibility. Additionally, these tests are frequently available to – and are sometimes directly marketed at – children, adolescents, and parents.

Given the questionable scientific legitimacy and lack of clinical significance of much of the information provided by these lifestyle-oriented genetic tests these tests seem to raise different policy issues, especially when they are used to test children and adolescents. For instance, the relatively low impact of this type of testing raises the question of whether children’s autonomy and privacy interests are implicated to the same extent as in other types of genetic testing. In this regard, the extent to which children and adolescents have a right to undergo DTC genetic testing if they want to or a right to refuse testing against the wishes of their parents is also relevant. Additionally, it is necessary to consider the potential psycho-social impact of these types of tests on children and adolescents and the extent to which concerns over potential harms should guide policy development. This work maps the major policy considerations raised by lifestyle-oriented DTC genetic testing of children and adolescents and considers potential policy responses such as regulation through government health authorities, truth in advertising frameworks, and education of health care professionals.