Recreational DNA tests: risks for your privacy and genetic data

In this article we take stock of the dangers of recreational DNA tests, prohibited in France but still popular. Data collection, reliability, security and emotional consequences - which you need to know before doing a test.

©️Geneafinder

While recreational DNA tests are still prohibited in France, it is estimated that 100,000 to 200,000 French people would have recourse to these tests each year. In addition, the film Cocorico, directed by Julien Hervé and released in 2024, presents the misadventures of a family that discovers its genetic origins thanks to DNA tests - a light comedy which denotes in the risks that these tests can present

This is why, on March 6, thea CNIL a de nouveau appelé à la vigilance quant à l’utilisation de tests génétiques « récréatifs ». She believes that Many risks exist concerning the collection of genetic data, which are, as we recall, your most precious data ...

Although these tests are prohibited in France, many foreign private companies offer these kinds of DNA tests: 23andme, My Heritage, Livingdna, Gene by Gene, Ancestrydna and many others ... However, it is good to know that, if these tests can sometimes unlock your genealogy, they still present threats and disadvantages

Recreational DNA tests: precious data presenting a real risk of discrimination

Alors qu’il peut sembler anodin de « cracher dans un tube », les utilisateurs de ces tests oublient souvent qu’ils y laissent un nombre d’information démentiel. DNA is our most precious personal datae For an essential reason: it contains the whole of our genetic heritage. But it does not only give our own information - Our genetic data also concerns our parents, our brothers and sisters and our children. 

Making a DNA test is therefore not an individual act and must not be presented as an act without consequences, as a means - like another - to do your genealogy. A DNA test will never be anonymous, it is your unique markere, and the anonymity of your loved ones is threatened at the same time.

And then, genetic information can be used to Discriminate individuals according to their ethnic origin, their predisposition to certain diseases or other genetic characteristicss. Les conséquences de ces discriminations peuvent être nombreuses et pourraient concerner l’accès à l’assurance, à l’emploi ou à d’autres services. Pire encore, les informations génétiques obtenues grâce à ces tests pourraient être utilisées pour promouvoir des idéologies dangereuses et totalitaires - des « mauvais souvenirs » qu’il est primordial de ne jamais oublier.

The reliability of recreational DNA tests is called into question

This kind of DNA tests is never 100%reliable. 

First of all, the results may vary depending on the company that realizes the TEst. They use various analysis methods and can even provide different results for the same person. In 2018, the genetic company Ambry Genetics demonstrated that the results of recreational DNA tests of five different companies could vary considerably, with Differences close to 40% in the estimate of ethnic ancestry.

These results are also imprecise Due to limited size and diversitye (above all European basis) of the reference database used to compare customer DNA to that of reference populations. This lack of reliability and therefore, of precision, can lead to great disappointments.

Finally, it is important to remember that your DNA will never give an indication of your culture. He will not tell you about the places, history and cultures of your ancestors either.

La confidentialité et la sécurité des données génétiques sont à risque

Your genetic data is not frankly protected once you have transmitted it to the company which sold you a recreational DNA test. They can, in addition, be kept between 1 to 10 years ...

Indeed, the companies that offer you these tests can sell or share their customers' data with tiers - pharmaceutical companies, insurers, police, for example. Third parties who can also reuse your genetic data for commercial, medical and judicial purposes without your consent. To find out if the company you would be tempted to buy a DNA test works closely with this kind of partners, it is obviously to peel their privacy policies and general conditions of use and sale - which is not an easy task. Also let's not forget that companies are free to modify their privacy policy (with your consent).

And then, Genetic data greatly interests computer piratess. They can therefore be hacked and stolen to commit fraud, identity flights or to access sensitive health information and family history. These genetic data are worth gold, let's not forget.

In 2023, The 23andme site acknowledged that information related to DNA tests of 6.9 million customers had been stolen. The data recovered is the names, the years of birth, the links with other people and their percentage of common DNA, genealogical analysis and geographic location. It seems that the hacker has used stolen identifiers and passwords on other sites - an additional reason not to use the same password everywhere ...

As for myheritage, The UFC-Que Choisir chose to enter the CNIL in 2020, believing that the purposes of its tests were poorly supervised and imprecise, that customer rights on their own data were too limited and that the data was ultimately accessible to everyone by default. 

The emotional consequences of DNA test results are not negligible

Finally, many users underestimate the emotional impact of the results of a recreational DNA test. While the objectives of these tests can be genealogical or medical, it is good to know that The information returned can be surprising or even overwhelming on ethnic origins, family relationships or the risks of genetic diseasess. It has been shown that some users of these tests divert them for paternity research - results which go far beyond a fun investigation ...

Lack of genetic advice is another factor to take in counte When you choose to buy a DNA test. The companies that sell these tests offer very little support - it can be very complicated to understand and interpret their results.

In the United Kingdom  The Watchdogs organization has expressly asked DNA analysis companies to warn consumers Emotional risks, potentially traumatic.

Genealogical genetic tests - What does the law say in France?

Today in France, and as Recalls the CNIL, the law strictly frames the realization and use of genetic tests which « ne peuvent être réalisés que dans le cadre d’une enquête judiciaire, pour la prise en charge médicale ou à des fins de recherche ».

The French bioethics law formally prohibits the performance of DNA tests for recreational or genealogical purposes. 

The French Civil Code provides that anyone has the right to respect their private life and their secrecy of origins. Carrying out a recreational DNA test without the person's consent can be considered as a privacy damage. 

As for the public health code, it prohibits advertising for recreational and genealogical DNA tests. 

Finally, the GDPR also applies to the data collected by DNA test analysis companies. They must respect the rules relating to the collection, processing and protection of personal data.

Puisque ces tests sont interdits en France, il est important de rappeler que l’achat d’un test ADN récréatif est passible de 3 750€ d’amende (selon l’article 226‑28‑1 du code pénal) et que leur vente en France fait risquer aux personnes et entreprises proposant ces tests 15 000€ d’amende et un an de prison. 

Do you regret having done a recreational DNA test? What to do?

Have you completed a DNA test and finally regret having entrusted your most precious data to a company that is enriched thanks to this donation? You have several rights. 

The GDPR opens several rights to you in France and in Europe: 

• Right to information : You can ask to be informed of how your genetic data will be used, stored and shared.
• Right to consent : You must give your informed consent before a recreational DNA test while including the implications, risks and limits of such a test. 
• Right to confidentiality : DNA analysis companies must take measures to protect your data and prevent their disclosure from third parties without your consent. 
• Right : You can access your genetic data and recover it in a usable format. You can also ask who has access to your data and in which framework.
• Right to erasure : You can request the deletion of your genetic data if you no longer want it to be stored and/or used. 

The CNIL also has several levers in the face of the sale of genetic tests on the Internet. It performs regular checks regarding data processing which, in the event of RGPD breaches, can carry out corrective measures (fine up to 20 million euros or 4% of the world's turnover). These measures may concern foreign companies as long as the service offer is linked to people in the territory of the European Union. 

Finally and if the reading of this article does not cut you the desire to do a DNA test, do not forget to compare the conditions of use, sale and confidentiality policies of societies, to assess the risks run at length and to talk about it around you or even to talk to a health professional if your needs are more medical than genealogical.