Genetic tests on the Internet: uncertain reliability, but certain danger

Genetic tests Websites for distance selling genetic test kits generally offer deals on people’s family tree or genealogy. Customers receive a kit and return the necessary samples (saliva). An increasingly common practice that the French National Commission for Information Technology and Freedom (Cnil) deplores. It has just issued a press release that sounds like a warning to the general public: genetic tests sold on the Internet expose people to risks “related to the reliability of the results and the lack of transparency in the use of data » we can read.

“Recreational” genetic tests sold on the Internet will know everything about you

Companies offering these genetic tests, referred to as “recreational,” collect a large amount of information. They restore the data contained in human genomes; ethnic origin, phenotype (eye color, skin, morphology, etc.), health status, body characteristics (disposition to certain diseases, etc.)… Very often, questionnaires are added to determine physical characteristics, identity. , contact information and even personal information such as relationships, life events, food preferences, even photos. “All these data, individually and in combination, reveal a lot of information about people and are very valuable,” the CNIL continues.

The companies that market these tests provide few guarantees of their quality and safety of samples and data (analytical techniques, storage methods, etc.). The companies in question have even been observed partnering with other organizations that reuse samples, especially for research purposes.

In addition to the fact that this data can be stolen and resold on the darknet (the most recent data breach last December compromised thousands of sensitive data), another danger is that it does not only apply to the person who orders and performs the test, adds the Commission: “Genetic data they have the peculiarity of being third-party because genes are shared between ancestors, descendants and close family”.

Thus, without giving consent or being aware of the process, relatives risk disclosure of their personal, genetic and administrative data.

Finally, the information from these tests can have serious consequences and reveal secrets (adoption, gamete donation birth, parentage, etc.) or sometimes “announce” the arrival of a disease (genetic predisposition).

Practice prohibited in France

Today, in France, genetic tests can only be carried out as part of a judicial investigation, for medical treatment or for research purposes. Apart from these very specific cases, it is necessary to obtain the person’s consent.

Indeed, the extreme sensitivity of health data and genetic data led the European legislator to prohibit the processing of such data in principle, except in the cases just mentioned. Other provisions also apply in French law: the Civil Code, the Public Health Code, the Criminal Code, etc.

As a result, all these texts regulate very strictly the carrying out of genetic analyzes and prohibit in France the carrying out of “recreational” genetic tests, even with the consent of the person concerned.

Finally, it is little known that the purchase of a test by people living in France can be accompanied by a fine of 3,750 euros in the event of a check. In addition, the performance of a genetic test outside the medical and scientific field is prohibited and punishable by a fine of €15,000 and one year in prison for persons or companies offering such tests.

The Wild West of Wellness: Why Online Genetic Tests Are a Gamble

The internet offers a vast array of products and services, and genetic testing is no exception. While the idea of unlocking the secrets of your DNA from the comfort of your home might seem appealing, there are significant dangers lurking beneath the surface of these readily available online tests.

The Allure of Online Genetic Testing:

These tests often advertise uncovering a wealth of information, including:

  • Ancestry: Trace your roots and discover your ethnic background.
  • Disease Risk: Assess your susceptibility to certain diseases like cancer, heart disease, or Alzheimer’s.
  • Traits and Predispositions: Learn about your potential for physical characteristics, dietary needs, and even personality quirks.

The Dangers of Unreliable Results:

The problem with many online genetic tests lies in their uncertain reliability. Here’s why you should be cautious:

  • Questionable Science: The science behind some tests may be shaky, leading to inaccurate or misleading results.
  • Limited Scope: These tests often analyze a tiny fraction of your entire genome, providing an incomplete picture of your genetic makeup.
  • Misinterpretation of Results: Deciphering genetic information can be complex. Without proper guidance from a medical professional, you might misinterpret the results, leading to unnecessary worry or a false sense of security.

Beyond Inaccuracy: Privacy Concerns:

  • Data Security: Who owns your genetic data after the test? There’s a risk that companies might sell your information to third parties without your full knowledge or consent.
  • Insurance Implications: Some insurance companies might use your genetic data to discriminate against you in the future.
  • Targeted Advertising: Your genetic data could be used to create highly personalized advertising profiles, potentially impacting your privacy.

What are Safe Alternatives?

If you’re interested in genetic testing, consider these options:

  • Consult a Doctor: Talk to your doctor about genetic testing and whether it’s right for you. They can recommend reputable labs and help you understand the results.
  • Look for Accreditation: Choose tests from companies accredited by reputable organizations that ensure quality standards.
  • Understand Limitations: Be aware that genetic testing doesn’t provide definitive answers. It’s just one piece of the puzzle when it comes to your health.

The Bottom Line:

Online genetic testing can be a tempting proposition, but the risks associated with unreliable results and potential privacy breaches are significant. Before taking a leap, consult a doctor and explore reputable options that prioritize accuracy and data security. Remember, your health is too important to gamble with.

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