- Children and Genetic Identification of Talent
The regulation of direct-to-consumer genetic testing has till now focused on identifying predispositions to specific health problems and quality issues in testing, such as analytical and clinical validity criteria. In the United States, for example, the Food and Drug Administration warned that federal regulations for medical devices will apply to commercial genetic tests for health purposes.
By contrast, the regulation of commercial genetic testing for other purposes is rarely discussed. These tests are advertised as identifying intelligence, athletic ability, and artistic sensibility in children. One company offers testing for a “gold medalist gene” purportedly associated with remarkable athletic talent; in Japan, the test has been favorably featured on some television programs and is recruiting customers through the Internet.
Although a link between genetic background and individual performance has been noted, we are a long way from practical application of this data. But we should anticipate global interest in the pragmatic application of genetic knowledge, especially in East Asian countries, where private spending constitutes most of education investment.
Concerned with this situation, the Japan Society of Human Genetics released an amended statement on consumer genetics at the end of 2010, adding warnings against “genetic testing for minors related to ability, character and future career paths” to its original 2008 statement on direct-to-consumer genetic testing for health purposes. The amendment also demands that JSHG members more actively share their information and perspectives on emerging genetic knowledge, not only with the public, but also with childhood education experts.
The statement reflects growing concerns about several ethical considerations. First, the potential impact on the tested individual’s life can be profound. Test results may discourage people from considering a particular career or employment without taking into account their interests or values. Conversely, an individual with the “right” genotype may be put under more pressure to perform well. Keeping in mind that the UNESCO Universal Declaration on the Human Genome and Human Rights warns us “not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity,” those who develop genetic technologies and knowledge must be aware of the potential implications on collective social values.
Second, defining the acceptable application of “paternalistic eugenics,” in which genetic testing is used by parents in “the best interests of the child,” is difficult. The market growth for genetic talent identification is based on the unique relationship between parent and child because existing social norms emphasize parents’ role in educating and nurturing children. For example, according to the United Nations Convention on the Rights of the Child, parents have “primary responsibility for the upbringing and development of the child. The best interests of the child will be their basic concern.” Because an individual’s talent might be related to fitness for a specific career, parents might feel pressured to use this technology for “the best interests of the child,” and it will be difficult for a third party to intervene.
Third, unlike genetic testing for health purposes, genetic talent identification services will be developed in the free market and guided by consumer demand. Because these services are provided in an environment that lacks professional counseling and appropriate aftercare, abuse and misunderstanding can be widespread. Furthermore, this could undermine public trust in genetic analysis and even research activities.
Public perception of the JSHG statement, however, is not straightforward. Some support it, but others are dubious about regulating these services. Some feel, for example, that government shouldn’t intervene in family decision-making. When considering next steps, two questions need to be answered: first, are commercial activities using genetic knowledge without professional follow-up acceptable, and second, is regulating access to these tests justifiable strictly because of social concern? We should not underestimate the social significance of genetic talent identification just because of its technical immaturity. [End Page c3]
Yusuke Inoue is assistant professor
Kaori Muto is associate professor in the Department of Public Policy at the University of Tokyo’s Institute of Medical Science.