DNA Testing on the Internet: Is it Legal? What are the Risks?

With just a saliva sample, companies based in Europe, the United States, or Israel (these are just among the most well-known companies), offer to decrypt your genetic heritage for less than €100 and provide you with percentages regarding your affiliation to different ethnicities worldwide or your risks of developing cancer or other diseases. Are these DNA tests allowed in Europe? What about in France? What are the risks?

  1. What is the regulation in France regarding DNA tests?
  2. What are the risks of genetic tests sold on the internet?
  3. Advice if you purchase a DNA test for a relative residing in a country where it is allowed?

What is the regulation in France regarding genetic tests?

In France, a genetic test can only be carried out upon request from a court. This request may arise in various contexts, such as in the case of a court-ordered paternity test or for specific medical and scientific research purposes. If you submit a DNA sample outside the cases provided by law, you may face a fine of €3,750 (Article 226-28-1 of the Penal Code), and companies offering this service may face imprisonment for one year or a fine of €15,000.

Furthermore, any "advertising approach related to the examination of constitutional genetic characteristics of a person" is prohibited.

It is important to note that despite persistent advertisements on the internet and social networks, the act of ordering a DNA test online is strictly prohibited in France. This prohibition applies whether the order is placed directly through the company or via an online platform, even if the testing company is situated in a European country where such actions are permissible.

What are the risks of genetic tests sold on the Internet?

  • Genetic data = protected personal data

By requesting the analysis of your DNA, you transmit sensitive information protected by law to the laboratory, information which allows the identification of an individual. In Europe, the General Data Protection Regulation (GDPR), which came into effect in May 2018, explicitly outlines "biometric and genetic data" as two new categories of protected personal data. For consumers, this entails the entitlement to information, access, and the right to have their genetic data forgotten. Simultaneously, the company conducting the DNA test is obligated to fulfil specific responsibilities, including obtaining the consumer's consent, providing information about their rights, and ensuring secure data storage within the permissible timeframe.

The GDPR protects consumers and establishes binding rules for laboratories, even those based in third countries, offering DNA tests to European consumers. Additionally, to avoid the risks of commercialisation or hacking of the genetic database, you can request the deletion of your data from the laboratory if you have undergone a DNA test. 

  • Misinterpretation of DNA test results

The growing interest in Europe regarding understanding one's genetic heritage and potential predispositions to hereditary pathologies underscores the need for caution due to potential hasty interpretations stemming from insufficient information about the reliability of diagnoses. Given the ongoing advancements in medical and genetic research, crucial personal factors of the individual undergoing testing (such as lifestyle, family history, and environment) may not be adequately considered at the time of the test. Consequently, the same results might be subject to different interpretations in the future. It is essential to maintain a critical and cautious stance towards the received results and engage in discussions with a qualified medical professional for a comprehensive understanding.

  • Psychological consequences

Confronted with the outcomes of a genetic test uncovering a family secret, non-paternity, or connections within lineage, the psychological ramifications can be profound. The assertion of the "right to know" may encounter restrictions when potential risks to the individual become apparent.

Advice if you purchase a DNA test for a relative residing in a country where it is allowed

  • Ensure the reliability and seriousness of the seller or mobile application offering these genetic tests; don't hesitate to contact customer service to test it.
  • You can also contact the laboratory to see if the seller is authorised to sell their tests.
  • Read the information provided by the laboratory carefully; make sure you have a thorough understanding of how the test works, its analysis procedures, etc.
  • Consult the information on the laboratory's personal data protection policy: how will genetic data be stored? Where? For what purpose? Will they be transmitted to third parties?
  • Consider if you agree to the subsequent use and reassessment of genetic data.
  • Know that you have a 14-day right of withdrawal for any online purchase. Take the time to think it over!
  • Before sending a DNA test, check the type of results offered. You can choose to exclude certain types of results.
  • If the received results concern the health of your relatives, advise them to contact their doctor for a medical interpretation which holistically considers their history, lifestyle, and current scientific developments. Be cautious with these results and the recommendations that may be given on diet, lifestyle, etc. within your DNA test. It is always recommended to discuss them with a doctor first. 
  • Feel free to ask the company to delete the data once the results are received

Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Innovation Council and Small and Medium-sized Enterprises Executive Agency (EISMEA). Neither the European Union nor the granting authority can be held responsible for them.