To protect consumers, governments should step in to address the risks of DNA testing.
The market for personal genomics, also known as direct-to-consumer testing, is flourishing and millions of individuals worldwide have used these DNA testing services. The process is simple: Through a mundane online order, consumers receive a kit, provide a saliva sample, and return it to the company for analysis. As one key market player put it: “It’s just saliva. No blood. No needles.”
Users attracted to these personalized genetic tests can have high expectations. With these tests, companies offer to help users manage and optimize their health, discover their genetic risks, learn about their ancestry, and achieve higher athletic performance. Indeed, some researchers argue that personal genomics will change lives.
But there is more to these services than meets the eye. Our research suggests that consumers and government regulators should be vigilant toward companies that sell genetic tests to individuals. The direct-to-consumer genetic testing market is one in which enormous financial interests, public health, and sensitive personal data collide. This intersection results in a market equilibrium that disadvantages consumers.
Consumers are mostly unaware of the risks and the limitations of these tests. For starters, consumers do not pay adequate attention to the legal arrangements—privacy policies, consumer contracts and informed consent forms—that govern these tests. Our study suggests that these legal texts typically contain complex and obscure language in multiple lengthy documents buried in inconspicuous links.
Beyond that, users often misperceive the meaning and significance of the services they consume. Genetic data and genetic test results are complex, but most consumers do not possess sufficient scientific education and understanding of statistical risks.
Moreover, most providers test merely a portion of an individual’s genome. Consumers are unlikely to realize that this limits the usefulness of many tests. Consequently, consumers may often form unfounded and unrealistic expectations.
A further limitation is that most tests for complex diseases are not standardized, but companies test different things. Consumers obtain contradictory results from different companies, which reduces the usefulness of such tests.
Companies fuel consumer misperception by providing disproportionate and inaccurate positive messages about testing and relatively little information about the relevant risks and limitations. To facilitate consumer enthusiasm, service providers also often employ scientific language that impresses consumers while promising them personalized and precise medical advice.
These products can also pose multiple data-related risks that consumers are not likely to heed. Consumers may not realize, for example, that firms can store genetic data indefinitely.
In addition, consumers may not appreciate that the contracts they “accept” allow companies to use genetic data, other personal data, and physical samples for medical research. Thus, service providers may profit from people’s genetic information in ways that could expose sensitive personal information.
Furthermore, service providers can collaborate with insurance companies. Consumers may not realize that their genetic information could impact their insurance coverage and premiums. As if that is not enough, some services stated in their contracts that consumers who do not reveal genetic tests to their insurers may be committing fraud.
Importantly, the significance of genomic data goes beyond the individual tested, and the potential impacts of personal genomic services should concern society at large. The aggregate effect of amassing sensitive data on millions of consumers makes potential data leaks more dangerous. The more valuable the data become, the more likely it is that third parties—including hackers, terrorists, and other criminal and ill-intentioned people—will attempt to obtain it.
Companies are unlikely to evaluate accurately the harm they inflict on consumers. This outcome is all the more so when companies want to believe that their services are pure business or that they contribute to consumers’ well-being.
Consumers are not the best risk-avoiders either. One cannot and should not expect consumers to acquire scientific knowledge and skills, read lengthy, complex, hidden texts, and exhibit constant suspicion and skepticism as a precondition for taking a DNA test.
This issue is exactly where regulation can help. To address this failure, governments should introduce consumer data rights that are tailored to personal genetic testing. This step should come alongside other regulatory measures, such as compliance audits, mandatory codes of conduct, and model privacy policies and contracts for the industry.
Regulation should empower consumers and strengthen their control over their genetic data, giving consumers the right to access their genomic data, transfer it, and erase it.
After all, DNA testing is not “just saliva.”
The authors received funding from the Borrin Foundation for this research, but the views expressed in this essay are those of the authors and do not represent the views or endorsement of the Borrin Foundation.