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Before taking a recreational DNA test, discover the dangers to your privacy and the security of your genetic data.
©️Geneafinder
While recreational DNA tests are still banned in France, it is estimated that 100,000 to 200,000 French people take these tests each year. Additionally, the film 'Cocorico,' directed by Julien Hervé and released in 2024, presents the misadventures of a family who discover their genetic origins thanks to DNA tests - a light comedy that pales in comparison to the risks these tests can present.
That’s why, on March 6, the CNIL again called for vigilance regarding the use of genetic tests labeled as 'recreational'. It estimates that many risks exist concerning the collection of genetic data, which, as a reminder, are your most precious data...
Although these tests are banned in France, many foreign private companies offer this type of DNA test: 23andMe, MyHeritage, LivingDNA, Gene by Gene, AncestryDNA, and many others... However, it’s good to know that while these tests can sometimes unlock your genealogy, they also present threats and inconveniences that should not be overlooked.
While it may seem harmless to 'spit in a tube,' users of these tests often forget that they leave a wealth of detailed information. DNA is our most precious personal datae because it contains the entirety of our genetic heritage. But it doesn’t just provide our own information - our genetic data also concerns our parents, siblings, and children.
Taking a DNA test is therefore not an individual act and should not be presented as a consequence-free act, like another way to do genealogy. A DNA test will never be anonymous; it’s your unique marker, and the anonymity of your relatives is threatened by the same opportunity.
Moreover, genetic information can be used to discriminate against individuals based on their ethnic origin, predisposition to certain diseases, or other genetic characteristics. The consequences of such discrimination can be numerous and may affect access to insurance, employment, or other services. Worse yet, the genetic information obtained through these tests could be used to promote dangerous and totalitarian ideologies—'bad memories' that it is crucial never to forget.
This type of DNA test is never 100% reliable.
First, the results can vary depending on the company conducting the test. They use different analysis methods and may even provide different results for the same person. In 2018, the genetic company Ambry Genetics demonstrated that the results of recreational DNA tests from five different companies could vary considerably, with differences close to 40% in the estimation of ethnic ancestry.
These results are also imprecise due to the limited size and diversitye (largely European-based) of the reference database used to compare clients' DNA to reference populations. This lack of reliability and precision can lead to major disappointments.
Finally, it is important to remember that your DNA will never provide information about your culture. It also won’t inform you about the places, history, and cultures of your ancestors.
Your genetic data is not well protected once you have transmitted it to the company that sold you a recreational DNA test. It may also be stored for 1 to 10 years...
Indeed, companies that offer these tests can sell or share customer data with third parties—s such as pharmaceutical companies, insurers, law enforcement, for example. These third parties can also reuse your genetic data for commercial, medical, and legal purposes without your consent. To find out if the company you might be tempted to buy a DNA test from works closely with this type of partner, it is necessary to carefully examine their privacy policies and general terms of use and sale—which is no small task. Let’s not forget that companies are free to change their privacy policy (with your consent).
Genetic data is of great interest to hackers. It can therefore be hacked and stolen to commit fraud, identity theft, or to access sensitive information about health and family history. Remember, genetic data is worth its weight in gold.
In 2023, the site 23andMe acknowledged that information related to the DNA tests of 6.9 million customers had been stolen. The recovered data includes names, birth years, links to other people and their shared DNA percentage, genealogical analysis, and geographical location. It appears that the hacker used credentials and passwords stolen from other sites—an additional reason not to use the same password everywhere...
In the case of MyHeritage, UFC-Que Choisir filed a complaint with the CNIL in 2020, stating that the purposes of its tests were poorly defined and imprecise, that customers' rights over their own data were too limited, and that the data was ultimately accessible to everyone by default.
Finally, many users underestimate the emotional impact of recreational DNA test results. While the goals of these tests may be genealogical or medical, it is important to know that the information provided can be surprising, even upsetting, about ethnic origins, family relationships, or genetic disease riskss. It has been demonstrated that some users use these tests for paternity searches—results that go far beyond a playful investigation...
Lack of genetic counseling is another factor to consider when choosing to buy a DNA test. Companies that sell these tests offer very little support—it can be very complicated to understand and interpret their results.
In the UK, the Watchdog organization explicitly asked DNA analysis companies to warn consumers about the emotional risks, which can be traumatic.
Today in France, as reminded by the CNIL, the law strictly regulates the conduct and use of genetic tests that “can only be conducted within the framework of a judicial investigation, for medical care, or for research purposes”.
The French Bioethics Law formally prohibits the conduct of recreational or genealogical DNA tests.
The French Civil Code, meanwhile, provides that everyone has the right to respect for their private life and the secrecy of their origins. Conducting a recreational DNA test without a person’s consent can be considered a breach of privacy.
As for the French Public Health Code, it prohibits advertising for recreational and genealogical DNA tests.
Finally, the GDPR also applies to the data collected by companies that analyze DNA tests. They must comply with the rules regarding the collection, processing, and protection of personal data.
Since these tests are banned in France, it is important to recall that purchasing a recreational DNA test is punishable by a fine of €3,750 (according to Article 226-28-1 of the penal code) and that their sale in France risks fines of €15,000 and one year in prison for individuals and companies offering these tests.
You took a DNA test and now regret having entrusted your most precious data to a company that profits from this donation? You have several rights.
The GDPR gives you several rights in France and Europe:
The CNIL also has several levers against the sale of genetic tests on the Internet. It carries out regular checks on data processing that, in case of GDPR breaches, can lead to corrective measures (fines up to €20 million or 4% of global turnover). These measures can concern foreign companies as long as the service offer is linked to individuals in the European Union.
Finally, if reading this article doesn’t deter you from taking a DNA test, remember to compare the terms of use, sales, and privacy policies of companies, thoroughly assess the risks involved, and discuss it with others, or even consult a healthcare professional if your needs are more medical than genealogical.