Protection of genetic data
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.
The protection of your personal data
The fact of collecting and processing personal data, the GDPR requires companies to inform people about the use of their data and to respect their rights . As responsible for data processing, companies must therefore take measures to guarantee that the use of this data respects the privacy of the persons concerned.
The particularity of genetic data
Genetic data is not personal data like any other. These are sensitive data and they form a special category within personal data. This is information that uniquely reveals the nature of a person, data concerning health or ethnic origin.
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Genetic data also has the particularity of being not only personal, but also multi-personal, as it can be transmitted and shared.
They can be linked to the DNA of its carrier and make it possible to distinguish it among all other human beings, but they are also shared in part by several people.
This particularity then creates a problem of reconciliation between the consent of family members and respect for medical secrecy.
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The GDPR prohibits the collection or use of this data, unless the person concerned has given his consent in an active, explicit and preferably written process, which must be free, specific and informed.
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In this way, any processing of genetic data must be accompanied by a consent procedure with the persons concerned.
Be careful, though, if you want to do a test using discrete samples and without the knowledge of the person, as the consent of the participants is systematically necessary to carry out a DNA test.
Thus, the analysis of genetic fingerprints without the consent of the sampled person is accompanied by a criminal sanction. Regardless of the country or the case, the violator of the test who uses discrete samples, assumes full responsibility .
Your rights - GDPR
The persons concerned by the processing of personal data have rights, still according to the GDPR, allowing them to retain control of the information concerning them.
Collection must be accompaniedof a right toinformation on the use of data. Information is always prior to data collection.
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The right of access and rectificationallows all persons concerned to have access to all the information concerning him, to know its origins, to obtain a copy or to require that his data be, as the case may be, rectified, completed, updated ordeleted.
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Genetic data is also protected by the rights of the data subject, such as the right toobject to the use of dataOrto withdraw your consentOrto request the erasure of all data.
Anonymity in DNA testing
The conditions of anonymity in a DNA test depend on its context and not on its reliability , since the analysis will follow the same procedures whether for a legal test or a private test.
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In a private DNA test, participants' data is inherently anonymous, as the labs have no control over participants' reporting of the information given.
Moreover, the creation of a DNA profile in the laboratory can in no way define the civil identity of the person. In this sense, the genetic profiles saved in the databases are annotated only under a test identification number which cannot be linked to the declarations of the clients, since they are uncertain.
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All the same, customers receive the results annotated with the prior declarations they provide when giving consent. But under no circumstances will the laboratory express with certainty a genetic relationship using the names of the participants.
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On the other hand, laboratories are not authorized to create genetic fingerprint files. In this sense, the genetic data cannot be used for any purpose other than for the reason mentioned in the consent that was signed by the participants. And no request for communication of data can be made to third parties.
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If we go further, we also realize that laboratories are required to respect the privacy of participants, despite the intimate nature of a DNA test. Be sure to read the terms and conditions of the company you are going to choose before placing an order.
Anonymity during a Private DNA test
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Conversely, a legal test aims precisely to verify the identity of the participants. It is therefore unthinkable to carry them out anonymously.
This is why, during a forensic test, the identity of the participants is checked before the samples are taken in an approved laboratory.
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Legal tests can be requested during an administrative procedure or judicial in many countries, which can sometimes be long and very expensive.
But in some countries, such as Belgium, it is accepted that private laboratories provide you with legal tests outside of all procedures.
Anonymity during a Legal DNA test
During a legal test, the genetic profile is then saved with the civil information of the person concerned. It seems all the more obvious that this identity must be preserved, since at any time a judicial decision can request laboratory verification in order to establish a biological filiation link between two people.
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In this sense, the withdrawal of your consent will cancel the entire procedure and you will no longer be able to use the results as a document during your administrative procedures.
Please note that this extensive control of participants does not however exclude the inherent guarantees for all with regard to genetic recording.
The authorities cannot do what they want afterwards with the samples taken, in particular reuse them in other cases that have nothing to do.
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.
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.
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.
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.
