Genetic data are not like other personal data. They are sensitive data and belong to a special category of personal data.
These are pieces of information that uniquely reveal a physical person, including data related to health or ethnic origin.
Genetic data are also unique in being not only personal but also multi-personal, as they are inheritable and shared.
They can be linked to the DNA of their carrier, distinguishing them among all other human beings, but they are also partially shared with several people.
This unique characteristic creates a challenge in reconciling family members’ consent with medical confidentiality.
The GDPR prohibits collecting or using this data unless the concerned individual has provided active, explicit, and preferably written consent that must be free, specific, and informed.
Thus, any processing of genetic data must include a consent procedure for the individuals concerned.
However, be cautious if you plan to conduct a test with discreet samples without the person’s knowledge. The participants’ consent is always necessary for performing a DNA test.
As such, analyzing genetic fingerprints without the consent of the person involved carries a criminal penalty. Regardless of the country or situation, anyone conducting a test using discreet samples is fully responsible for their actions.
The particularity of genetic data
Your rights - GDPR
Individuals affected by the processing of personal data have rights, according to the GDPR, allowing them to retain control over information concerning them. Data collection must be accompanied by a right to information about the use of the data. This information must always precede data collection.
The right of access and rectification enables all concerned individuals to access all information about them, learn about its origins, obtain a copy, or demand that their data be rectified, completed, updated, or deleted, depending on the case.
Genetic data are also protected by the rights of the individual, such as the right to object to the use of the data, withdraw consent, or request the deletion of all data.
When collecting and processing personal data, the GDPR requires companies to inform individuals about the use of their data and to respect their rights.
As the party responsible for data processing, companies must take measures to ensure the use of this data respects the privacy of the individuals concerned.
In Europe, the GDPR “ The General Data Protection Regulation ” governs the processing of personal data.
It offers a legal framework that applies to any organization, public or private, regardless of its size, country of establishment and activity, provided that it is established on the territory of the European Union or that its activity directly targets European residents.
Protection of genetic data
In a private DNA test, participant data is inherently anonymous, as laboratories have no control over the accuracy of the information participants provide.
Moreover, the creation of a DNA profile in the laboratory cannot, under any circumstances, establish the civil identity of the person. In this sense, genetic profiles stored in databases are only annotated with a test identification number that cannot be linked to client declarations, as these are uncertain.
However, clients receive results annotated with the preliminary information they provided during their consent process. But under no circumstances will the laboratory definitively confirm a genetic relationship using participants’ names.
Furthermore, laboratories are not authorized to create genetic fingerprint files like the FNAEG in France. Thus, genetic data cannot be used for purposes other than those specified in the signed consent provided by the participants.
No request to share data can be made with third parties.
Looking further, it becomes clear that laboratories are required to respect participants’ privacy, despite the intimate nature of a DNA test. Be sure to read the terms and conditions of the company you choose before placing an order.
Anonymity during a Private DNA test
The conditions for anonymity in a DNA test depend on its context and not its reliability, as analyses for both legal and private tests follow the same procedures.
Conversely, a legal test is specifically designed to verify the identity of participants. It is therefore inconceivable to conduct such tests anonymously. For this reason, during judicial tests, participants’ identities are verified before sample collection in an authorized laboratory.
Legal tests may be required as part of administrative or judicial procedures in many countries, which can sometimes be lengthy and very costly.
However, in some countries, such as Belgium, private laboratories are permitted to provide legal tests without requiring formal procedures.
In a legal test, the genetic profile is saved along with the civil information of the individual concerned. It becomes evident that this identity must be preserved since, at any time, a judicial decision may request verification from the laboratory to establish a biological relationship between two individuals.
In this sense, withdrawing your consent will cancel the entire process, and you will no longer be able to use the results as a document in your administrative procedures.
However, this thorough participant verification does not negate the guarantees provided to everyone regarding genetic filing. Authorities cannot freely use the collected samples for unrelated matters, including reusing them in other cases.
Anonymity during a Legal DNA test
Read the terms and conditions of the laboratory
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It is mandatory to provide the terms and conditions of sale on the laboratory's website.
Even if it may seem tedious, you should still dwell on the conditions exploitation and conservation of your personal data by the laboratory.
If some information seems too vague or generalists, do not hesitate to contact customer service to confirm the conditions of a contract.
How to choose a Secure Laboratory?
It is important for the protection of your data during a test to find out your parentage to choose a trusted laboratory. In addition to the accreditations that the laboratory must hold to carry out the genetic analysis, it is also crucial that the use of your genetic data is not diverted from your consent.
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For this, please follow the different points that we have grouped below.
The DNA laboratory must be Accredited
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It is necessary to verify the accreditation of the laboratory for a genealogy or relationship DNA test.
This accreditation is regularly renewed by the ISO international authorities during a verification of several strict criteria regarding the analysis methods, training of laboratory technicians and laboratory equipment.
Thus, upon request, the laboratory must provide the client with the most recent certificate received, as proof of reliability.
Check the genetic consent form
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When collecting samples, you must sign and complete a form which gives the laboratory the right to use your DNA for genetic analysis.
It is also crucial that the consent form be explicit about the use of your genetic information by the company and the laboratory.
Attention! If no form is requested, it is illegal to do a DNA analysis and this in all countries of the world.
Our list of verified laboratories
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We regularly update the list of laboratories that offer DNA tests online and with which you can order a DNA test online.
The laboratories we feature comply with all international accreditations and online genetic data protection measures.
