DTC-GT services: a hindrance for autonomous decision-making
Direct-to-consumer genetic testing (DTC-GT) companies, such as 23 and Me, are offering ancestry and health kits which analyse consumers’ genetic composition to provide information on their ancestry, on their likelihood to develop ‘fun’ traits such as eye color, and on their predispositions for some diseases such as Alzheimer. DTC-GT companies have conveyed the idea that these tests have many benefits for consumers. Based on the trend of personalized genomic medicine, it is put forward that they can provide valuable information on consumers’ health and that they will be able, without any intervention of the clinical setting, to be proactive in their health monitoring and management.
However, DTC-GT companies are largely unregulated. Coupled with the fact that these tests are of low clinical validity, this practice raises many legal and ethical concerns. One of the main questions is whether DTC-GT services help consumers to make autonomous decisions. Focusing mainly on the companies’ practices, this blog will argue that DTC-GT services are more of a hindrance for autonomous decision-making. After considering the notion of autonomous decision-making within the specific context of DTC-GT, the persuasive marketing approach and the lack of genetic counselling of DTC-GT companies will then be discussed to show to what extend their services inhibit autonomous decision-making.
Autonomous decision-making within the context of DTC-GT
In bioethics, the notion of autonomy refers to the ability of a competent person to make his or her own decisions about their health care freely and without external influence. Within the DTC-GT context, this may only happen when consumers both do not have an exaggerated vision of the tests’ benefits and have received and understood sufficient information on the nature and characteristics of the tests, which depend on the informed consent process they went through.
A persuasive marketing approach
First, marketing campaigns convey the message that consumers will be empowered and capable of making better decisions in the management of their health. On the website of 23 and Me, testimonials are reporting that the tests results ‘have been life changing’. There are also video and advice from a consultant, suggesting that people have the social responsibility to take care of their health and to take advantage of these services. The information is not provided in a neutral way and create incentives to buy these tests.
These techniques attempt to manipulate the ability of consumers to reason and judge freely on whether they need this service or not. In contrast to claims and advertisement regulations for drugs or food supplements, this commercial communication presumes the consumers are autonomous and rational. As already mentioned, DTC-GT is at the intersection between the medical and the commercial context. By exaggerating the benefits, suggesting that DTC-GT are clinically useful and passing the risks and limits of the test under silence, consumers may have unrealistic expectations for these tests. This communication does not serve the purpose of supporting autonomous decision-making and bypass the individual’s capacity to rationally reason and make decisions based on adequate and trustworthy information.
Lack of adequate genetic counselling
Secondly, it is known that genetic counseling has an important role to play to ensure informed consent and autonomous decision-making. Genetic counsellors can, among other things, explain to consumers the nature and characteristics of the tests, their benefits and limits, the diseases being tested for, the other potential factors to consider, as well as explain the results and present the subsequent possible actions the consumer can take. By giving them this information and promoting a constructive dialogue, consumers are put at the center of decisions about the management of their health. Armed with all the necessary tools, they can critically reflect on the different outcomes and it can be considered that consumers are exercising autonomous decision-making, even if their decisions involve in fine uncertainties and psychological harm.
A recent study showed that most DTC-GT companies fail to ensure an adequate genetic counselling service. Before the consumers order the test, access to a genetic counsellor is never offered. At the same time, the information on the websites are blurring the lines between, on one hand, the tests related to ancestry and fun traits, and, on the other hand, the tests related to health and serious diseases. As a result, consumers may not be fully aware of the sensitivity of certain information they will receive nor on what is the exact value of these tests. Once the test results are released, 23 and Me simply advises consumers to consult a professional without providing internal access to genetic counsellors. The results may be difficult to understand for most of the consumers, who may even be surprised and overwhelmed by some information. Considering also the importance of the false-positive or false-negative, the lack of genetic counselling may lead consumers to make inappropriate decisions. This lack of support from DTC-GT companies is a hindrance for autonomous decision-making on further treatments or changes in lifestyles.
The expected effect of more autonomy may then prove to be futile. If DTC-GT services do not help consumers to make autonomous decisions, then consumers may go and see their GPs to obtain advice. Even if DTC-GT information may be useful, they do not really empower the consumers but rather give further information to GPs when interacting with their patients.
To conclude, a neutral approach in the presentation of the DTC-GT services and adequate genetic counselling are two missing tools to improve autonomous decision-making within the context of DTC-GT and healthcare. Contrary to the clinical context, consumers’ autonomy is not a requirement but rather a means to an end for DTC-GT companies that rely on empowerment rhetoric to make profit.
