Genetic Data Protection

The protection of your personal 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 organisation, public and private, whatever its size, its country of establishment and its activity as soon as it is established on the territory of the European Union or its target activity directly from European residents.

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By collecting and processing personal data, GDPR requires companies to inform people about the use of their data and to respect their rights . As data controller, companies must therefore take measures to ensure that the data is used in a way that respects the privacy of the persons concerned.

The particularity of genetic data

Genetic data is not personal data like any other. It is a sensitive data and forms a special category of personal data. It is information that uniquely reveals a person, data concerning health or ethnic origin.

Genetic data also has the particularity of being not only personal but also multi-personal because it is transmissible and shared . It can be linked to the DNA of its carrier and make it possible to distinguish it from all other human beings, but they are also partly shared by several people. This particularity then creates a problem of reconciliation between the consent of family members and respect for medical confidentiality.

The GDPR prohibits the collection or use of this data, unless the data subject has given his consent in an active , explicit and preferably written process, which must be free, specific and informed.

Therefore, any processing of genetic data must be accompanied by a consent procedure with the persons concerned .

Be careful though, if you want to test using discrete samples without the person's knowledge. Because 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 test offender who uses discreet samples fully accepts their responsibility . More information on the types of samples

Your rights - GDPR

The persons concerned by the processing of personal data have rights, still according to the GDPR, allowing them to keep control of the information concerning them. The collection must be accompanied by a right to information on the use of the data . Information is always prior to data collection.

The right of access and rectification allows all data subjects to have access to all the information concerning them, to know its origins, to obtain a copy or to require that their data be, as the case may be, rectified, completed, updated or deleted .

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Genetic data is also protected by the rights of the data subject, such as the right to object to the use of the data or to withdraw your consent or to request the erasure of all data .

Anonymity in DNA testing

The conditions for anonymity in a DNA test depend on its context and not on its reliability , since the analysis for either legal or private testing will follow the same procedures.

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In a private DNA test, participant data is inherently anonymous, as laboratories have no control over participants' declarations of the information given . In addition, 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 an identification number of the test which cannot be linked to the declarations of the clients, since they are uncertain.

All the same, the clients receive the results annotated with the preliminary declarations that they provide during their consents. But in no case will the laboratory express with certainty a genetic relationship using the names of the participants.

In addition, laboratories are not authorised to establish genetic borrow files like the FNAEG in France. In this sense, genetic data cannot be used for any other purpose than for the reason mentioned in the consent that was signed by the participants. And no request for data communication can be made to third parties.

If we go further, we also realise 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 ordering.

Anonymity during a Private DNA test

Conversely, a legal test is precisely aimed at checking 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.

Legal tests can be requested during an administrative procedure or  judicial  in many countries, which can sometimes be long and very expensive. But some countries in Europe or elsewhere allow private laboratories to provide you with legal tests outside of all formalities.

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 make a request for verification at the laboratory in order to establish a link of biological filiation between two people.  

In this sense, withdrawing 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, this thorough control of the participants does not however exclude the inherent guarantees for all with regard to genetic registration. Authorities cannot do what they want with the samples afterwards, including reusing them in other unrelated cases.

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How to choose a secure laboratory?

It is important for the protection of your data during a test to know your parentage link 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.  

To do this, please follow the various points that we have grouped together below.

Read the terms and conditions of the laboratory:

 

It is mandatory to provide the terms and conditions of sale on the laboratory website. Although it may seem tedious, you should still focus on the conditions  exploitation and conservation  of your personal data by the laboratory. If some information seems too vague to you or  generalists, do not hesitate to contact customer service to confirm the terms of the contract.

Check the genetic consent form:

 

When taking 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 is explicit about the use of your genetic information by the company and the laboratory. Be careful 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:

 

It is necessary to verify laboratory accreditation for a genealogy or relationship DNA test. This accreditation is regularly renewed by the international ISO bodies during a verification of several strict criteria regarding analysis methods, training of laboratory workers and laboratory equipment.

Thus, on request, the laboratory must provide the customer with the most recent certificate received, as proof of reliability.

Our list of verified laboratories:

 

We regularly update the list of laboratories that offer DNA testing online and with which you can order DNA testing online. The laboratories that we promote comply with all international accreditations and online genetic data protection measures.

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