Teaching to the test

In their article ‘Marginally scientific? Genetic testing of children and adolescents for lifestyle and health promotion’, Caulfield et al. provide readers with a thoughtful and well-researched introduction to many of the ethical, legal, and social issues (ELSIs) raised by direct-to-consumer genetic testing of minors for reasons unrelated to disease. In their concluding section, the authors question whether the ELSIs discussed are ‘significant enough to trigger a regulatory response’ given the ‘lack of evidence of direct harm’. Their analysis of several potential lines of action represents an important follow-up to the many concerns discussed earlier in the paper. While the article does mention the role of ‘educational interventions’ and ‘providing accurate information to parents’, this option remains fairly underdeveloped in comparison to the article's focus on regulatory measures. However, it remains unclear whether the ELSIs discussed represent a threat unique enough to merit specific new policy amendments. As Caulfield points out in a previous article, ‘The fact that most genetic risk information is not tremendously predictive and that people are not, in general, having unique adverse reactions to the genetic results are, at a minimum, justifications for being cautious about any exceptionalist approach to the regulation of genetics.’1 Given this level of uncertainty, we suggest that this discussion should be complemented by a more detailed look at the role science communication could play in helping the general public gain a better understanding of the potential and the shortcomings of these technologies. One justification for this viewpoint lies in the very magnitude of the concerns being discussed. The genetic testing industry has been growing rapidly,2 both in market size and in popular awareness. Media representations have hyped genetic testing's potential to provide positive results while doing little to examine its possible drawbacks. In addition, many physicians may lack the time and expertise needed to properly inform patients about the potential risks of genetic testing.3 Furthermore, the complex, quickly evolving science behind genetic testing can make it difficult to fully understand and provide informed consent to these procedures.4 Given the potentially broad scope of its long-term impact, we suggest that mitigating the ELSIs associated with this technology may ultimately require education-based solutions over and above any regulatory intervention. While targeted science communication remains an emerging field, and can be complicated to implement,5 there is increasing evidence that public education plays a key role in harm prevention and reduction. A specifically tailored approach to new health concerns and technologies can empower patients and health technology users to make decisions better informed by fact.6 Perhaps the most widely acknowledged instance of education positively impacting public health is the success of efforts in North America throughout the past half-century to reduce the use of tobacco.7 Through educational efforts to increase awareness of the health implications of smoking as well as of the public's manipulation by the tobacco industry, both the use and the social acceptability of tobacco have been greatly reduced. While increasing regulation of the tobacco industry certainly played a key role in decreasing tobacco use, independent evaluations have shown the strong impact of educational initiatives, particularly those targeted toward youth.8 Public education has similarly played a remarkable role in the fight against HIV/AIDS, helping to increase knowledge about prevention, testing, and the assertion of reproductive and sexual rights.9 In contrast, the fight against childhood obesity offers numerous examples illustrating the ineffectiveness of over-reliance on regulatory mechanisms. While a number of US states have recently enacted laws regulating children's food consumption, such as by banning the sale of certain unhealthy foods in school vending machines, research has shown that without any subsequent education on nutrition these laws remain largely ineffective and may at times increase snack food consumption outside of school.10 Similarly, programs that have focused on requiring food providers to list health information, devoid of context and without further public engagement in good dietary practices, have failed to produce clear results demonstrating any impact on obesity.11 Given these precedents, we believe that any strategy designed to counteract potential concerns regarding the genetic testing of children and adolescents for lifestyle and health promotion should build on the lessons learned from successful public health campaigns. Rather than merely disseminating information, the strategies that are shown to be most effective employ an ecological perspective, which Bernhardt defines as including ‘multilevel communication strategies and interventions, such as tailored messages at the individual level, targeted messages at the group level, social marketing at the community level, media advocacy at the policy level, and media campaigns at the population level’. 12 This approach to education would target demographic groups that are more likely to be aware of and to use direct-to-consumer genetic testing. At the moment, this consists of consumers who are more likely to be affluent and highly educated.13,14 It would also take into consideration the fact that this discussion is occurring in the context of children and adolescents, which provides an even stronger argument in favor of focusing on education. From sexual health to tobacco use, evidence-based scientific communication aimed at a younger demographic has shown particular success.15 By educating young people realistically about the risks and outcomes of genetic testing, they can be empowered to work together with their parents to make informed decisions about their own health. To this end, we would propose the following: first, at the individual level, we should implement targeted education through better training of family physicians on the potential harms of genetic testing for minors in situations where it is not medically essential. Second, the media should be engaged by academic researchers and government representatives with consistent, simple, and accurate information regarding genetic testing for health promotion and recreational purposes. This would enable a concerted push to clarify the current hype and misconceptions regarding the efficacy of genetic testing and its possible outcomes. Finally, governmental bodies tasked with the management of public health should develop easily digestible, interactive methods of disseminating this information, such that both individuals seeking further information on DTC genetic testing for their children and adolescents themselves will be able to make better-informed decisions. Creative learning exercises, in which users observe harms in action and engage actively with the problem rather than just being handed information, have been shown to be especially effective.16 There is no question that well-conceived regulations can play a considerable role in public health harm prevention and reduction. However, assuming our underlying purpose is to minimize the potential harms incurred by the uptake of genetic testing for health promotion and recreational purposes, we propose that a broader, more education-based approach could be more effective in preventing abuses over the long term than would a focus on establishing regulations for this little-understood field and punishing specific infringements after they occur. We agree with Caulfield et al. that the genetic testing of children presents numerous potential ELSIs and applaud the overview they provide of these concerns. However, given the positions outlined above, we believe that it is also important to discuss the use of tested techniques from science communication and how they might be employed to help the public avoid the diverse risks to health and autonomy discussed in this article. In general, we urge legal scholars to continue exploring the potential for better-integrated policy and education approaches in addressing the many emerging technological challenges our society will come to face in the near future.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.