Should You Be Giving Your DNA to Consumer Health Companies?
Oct 25, 2024
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Kristen V. Brown, a staff writer for The Atlantic, and Hank Greely, a Stanford law professor, dive into the booming world of consumer DNA testing. They discuss the surprising limitations of tests from companies like 23andMe and the serious privacy risks involved. Discover the implications when these companies vanish and the fate of your genetic data. The conversation also unpacks existing legal protections, the ethics of collecting DNA, and the balance between potential health insights and privacy concerns.
Consumer genetic testing offers insights into ancestry and health risks, yet concerns about data security and privacy breaches remain significant.
The fate of genetic data collected by companies like 23andMe raises critical questions about user privacy in the event of corporate failures.
While consumer genetic tests promise actionable health insights, their actual value often falls short of practical guidance for individuals.
Deep dives
Consumer Genetic Testing and Data Privacy
Consumer genetic testing has grown rapidly, allowing individuals to gain insights into their ancestry, health risks, and food sensitivities in exchange for biological samples. However, the hacking of companies like 23andMe, which exposed personal data of millions, raises significant concerns about the security of genetic information. Once genetic data is out in the world, it becomes vulnerable, and while companies may implement protections, the risk remains that personal information could be exploited in unforeseen ways. This vulnerability is exacerbated by the growing understanding of genetics, making such information increasingly valuable to various entities beyond the individual.
The Uncertain Future of Genetic Data
The fate of data collected by genetic testing companies is fraught with uncertainty, especially as companies like 23andMe encounter financial difficulties. If a company goes bankrupt or is sold, customer data could be treated as a commodity, potentially disregarding previous privacy commitments made to users. In such cases, the legal obligations to protect customer privacy may weaken, as new owners are not necessarily bound by the original agreements. This raises critical questions about how customers’ genetic data could be used in the future or if it might be shared with third parties without their explicit consent.
Limitations of Current Genetic Testing Value
Despite the allure of genetic testing, the actual value of the information derived from these tests is often limited and not always actionable. Many individuals who undergo testing may receive results indicating a slight risk for certain conditions that do not translate into substantial preventive measures. For the average consumer, these results may not offer any practical guidance beyond general health suggestions, which diminishes their utility. As a result, while testing companies promote their services with the promise of revealing critical health insights, the reality is often much less informative.
The Complexity of Genetic Influence on Health
The understanding of genetics in relation to health has evolved significantly since the Human Genome Project, revealing that simple genetic determinism is an oversimplification. Numerous health conditions are influenced by complex interactions among hundreds of genes, environmental factors, and chance, complicating the relationship between genetic markers and health outcomes. This realization has contributed to skepticism about the predictive power of genetic testing, as it becomes clear that genetics is not the sole determinant of health. Consequently, while genetic data can provide some insights, it does not offer comprehensive answers for health management.
Broader Implications of Genetic Data Usage
The ethical implications surrounding genetic data extend beyond individual concerns to collective societal risks, especially in light of governmental advancements in genetic monitoring. Instances of governmental entities utilizing genetic data for surveillance purposes underscore the potential for misuse of sensitive personal information. Furthermore, existing laws such as HIPAA primarily protect information within healthcare settings, leaving gaps for data collected in consumer contexts like 23andMe. This gap poses a significant challenge as individuals may unknowingly expose themselves to privacy breaches, which cannot be adequately addressed without robust regulatory frameworks.
It’s been nearly twenty years since 23andMe, the consumer health company was founded. Since then, other companies have emerged, and in exchange for a tube of spit, a puff of breath, or a drop of blood, consumers can now not only find their ancestry and long-lost relatives, but learn what to eat that day or discover food sensitivities and propensity for diseases. But are these tests effective and what are the pitfalls of using a company you found on Instagram to test whether you’re likely to suffer from Alzheimer’s or cancer? And when those companies cease to exist, as troubled 23andMe might, what happens to all that health data? It’s one thing to share your email address or mobile number, and an entirely different proposition to share your genome. We’ll talk to experts about the world of consumer DNA-testing and how to protect yourself and your genome.
Guests:
Kristen V. Brown, staff writer, Atlantic Magazine
Hank Greely, law professor; founding director, Center for Law and the Biosciences, Stanford University
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