Marginally scientific? Genetic testing of children and adolescents for lifestyle and health promotion.

Abstract

‘Genetic testing can reveal crucial information to guide your training and nutrition strategies based on predispositions built into your DNA. Genetic testing identifies the ideal nutrition, training and recovery strategies for you and helps explain why athletes given the same training and nutrition plans respond differently. In short gene testing provides the ultimate in personalized nutrition and training guidance…’1 Direct-to-consumer (DTC) genetic testing has been in the news in recent years, especially since November 2013, when the US Food and Drug Administration (FDA) shut down 23andMe, one of several firms that offered people general health information based on their genetic test results.2 Much attention has been paid to the accuracy of these tests in predicting future risk of disease. This is understandable as the first wave of DTC companies, including 23andMe, eventually focused on providing genetic information of this nature. And much of the existing literature on the possible harms and benefits of DTC testing is largely an analysis of disease-oriented testing.3 But it should not be forgotten that many other DTC genetic testing products are being marketed throughout the world that are not focused on disease risk but instead offer information—of varying degrees of scientific legitimacy—relevant to things like fitness, diet, and athletic ability. In addition, non-traditional providers, such as homeopaths,4 naturopaths,5 and chiropractors,6 increasingly are offering genetic tests for the purpose of providing health and lifestyle advice. It seems inevitable that, unless the regulatory environment changes, this trend will continue, with genetic testing being offered to the public for an ever-increasing range of reasons not directly related to disease. In this paper, we map the policy issues associated with the marketing and use of genetic testing products outside of the context of disease risk. We focus on companies and providers that offer testing for a wide range of genetic traits, and consider the potential implications of offering these products for use in children and adolescents. While the size of the market for these services remains unknown, it is probably still relatively small.7 Nonetheless, an analysis of genetic testing in this broader context provides an opportunity to consider issues that are likely to increase in significance as genetic testing technologies become more affordable and as the idea of genetic testing becomes more socially acceptable.8 For example, the present analysis affords an opportunity to consider the possible harms, if any, and available policy options for regulating genetic testing services not focused on disease risk and that reside on the margins of credibility. As we will see, some tests are being marketed for purposes that are clearly scientifically absurd (eg for targeting homeopathic therapies and naturopathic detoxification regimens)9 while others have more scientific plausibility, at least theoretically (eg testing for genes related to obesity and athletic characteristics like sprinting ability). Obviously, not all of these services will raise the same issues. But what they do have in common is the provision of genetic information. Are most of these companies and providers simply leveraging the excitement surrounding genetics to market services with unproven utility that are largely harmless? Is there something about genetic testing, as opposed to other forms of equally predictive information, which justifies heightened regulatory oversight? Looking at these, and other,10 issues through the lens of children and adolescents highlight potential policy challenges that may be especially problematic.11 While one could argue that legally competent adults should have the right to choose whatever service they have an interest in (however useless), this may not be the case in the context of children and adolescents who lack legal capacity and may be particularly vulnerable to DTC industry marketing strategies. We will examine whether, in the context of genetic testing services that have little scientific data to support their purported uses, any regulatory or policy response is appropriate and the potential forms such a response could take.