Protection of Genetic Data
Having made this fundamental commitment, in this document we will inform you about the place where your DNA analysis will be performed (if you have contracted this service), the identity of the persons who will have access to your results (if any) or to your genetic data (if you have already directly provided a RAW DATA with your genetic data), the destination of your biological sample at the end of the analysis (if any), the storage of your genetic data and the use of such data, and the exceptional transfer of your genetic information to your biological family members.
By contracting the services of 24Genetics, we understand that you have read and understood the terms related to genetic data protection information, giving your consent to that effect.
I. PLACE OF GENETIC ANALYSIS (IF ANY)
In case of contracting a service that includes genetic analysis, this will be performed in a laboratory located in Denmark, Smedeskovvej, n.º 38, Galten, 8464; the specific exome analysis will be performed in a laboratory located in Lugo, c/ María Barbeito, n.º 61, PARQUE EMPRESARIAL AS GANDARAS; and, finally, the also specific genome analysis will be performed in a laboratory located in Granada, Plaza Ciudad de los Cármenes, n.º 3-Bajo.
All three are laboratories associated with 24Genetics and all three are also centers that meet all the quality requirements and have qualified personnel for this purpose.
These laboratories will not search your sample for any other agent, marker or biological or chemical component other than your DNA: they will process your sample for the sole purpose of determining your genetic information.
II. IDENTIFICATION OF THE PERSONS WHO WILL HAVE ACCESS TO YOUR RESULTS (IN CASE YOU HAVE CONTRACTED A DNA ANALYSIS) OR TO YOUR GENETIC DATA (IN CASE YOU HAVE ALREADY PROVIDED A RAW DATA WITH YOUR GENETIC DATA).
In the event that the contracted service is a DNA analysis, the laboratory will not be able to know your identity or any of your personal data, since the biological sample provided to you for the analysis will be subject to a codification or dissociation process: your personal data will not be associated with the sample because the information that identifies you will be substituted or unlinked by means of a unique bar code system. This will only allow duly authorized 24Genetics personnel to link the saliva sample, and the genetic information derived from it, to your 24Genetics customer account, so that only such duly authorized 24Genetics personnel will have access to the relationship between your biological sample, your DNA and information obtained from its processing, and the code assigned in each case. And, in any case, 24Genetics personnel who access your genetic data in the exercise of their functions will be subject to a permanent duty of secrecy.
Accordingly, only duly authorized 24Genetics personnel may access your personal data and the results of your genetic tests. Such data may only be disclosed to third parties with your express written consent.
The latter also applies in the event that the contracted service has been limited to the preparation of a genetic report on the genetic data provided by you.
III. DESTINATION OF THE BIOLOGICAL SAMPLE AT THE END OF ITS ANALYSIS (IF ANY)
In case of contracting a service that includes genetic analysis and, therefore, the sending by you of a biological sample, the destination of the sample at the end of the analysis will be its conservation, becoming part of the collections of biological samples of 24Genetics, and this in order to carry out genetic research, both immediate and subsequent.
The purpose of such research will be the study of genetic variants that may predispose to the development of a disease or condition the individual’s response to a specific treatment, with the aim of contributing to the improvement of knowledge, prevention and/or treatment; as well as the specification (or its greater precision) of the geographical areas from which it is derived, the nutrigenetic analysis and the analysis of the sport capacities, regarding, among others, the metabolic, muscular and cardiovascular profiles; and also the study of the properties of the skin and of the possible conditions of talent and personality, associated to genetics.
Such research will not cause you any additional inconvenience.
The research will be carried out both by 24Genetics’ own personnel and by personnel from other collaborating research institutions, duly authorized by 24Genetics.
You may revoke your consent to the storage and use of your biological sample for genetic research purposes (in order, for example, to have the sample destroyed or anonymized) at any time and without giving any reason, by contacting: Responsible for the Collections of 24Genetics, Paseo de la Castellana, n.º 95, 28th floor, Madrid, C. P. 28046, tlf. +34 910 059 099.Such revocation shall not extend to data resulting from research that has already been carried out.
You have the right to know the genetic data obtained from the analysis of the donated samples.
Your biological sample will be subject to an encryption or disassociation process: your personal data will not be associated with the sample because the information that identifies you will be replaced or unlinked using a unique barcode system. This will only allow duly authorized 24Genetics personnel to link the saliva sample, and the genetic information derived from it, to your 24Genetics customer account, so that only such duly authorized 24Genetics personnel will have access to the relationship between your biological sample, your DNA and information obtained from its processing, and the code assigned in each case. And, in any case, 24Genetics personnel who access your personal and genetic data in the exercise of their functions will be subject to a permanent duty of secrecy. Accordingly, only duly authorized 24Genetics personnel may access your personal data and the results of your genetic tests. Such data may only be disclosed to third parties with your express written consent. Furthermore, the protection of your personal data and, more specifically, the protection of your genetic data, are governed by the provisions of the Organic Law 3/2018 of 5 December on the Protection of Personal Data and the guarantee of digital rights, and by Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of individuals with regard to the protection of personal data.
Genetic research carried out on your biological sample may yield information relating to your health. In such a case, you have the right to have such information disclosed to you on the terms you set, including refusal to receive any information, in which case your right to opt out of receiving such information, including any unexpected discoveries that may be made and their potential significance to you, will be strictly respected.
Genetic information is generational information, in the sense that it reveals our heritage and is passed on to our offspring, so please be advised that it is in your best interest to pass on any information provided to you by 24Genetics to your biological family members.
In the event that 24Genetics needs to contact you (whether to collect new data, obtain additional samples, or for other purposes), 24Genetics will use the contact information in our database.
The transfer of samples that you make is free and altruistic, so you will not receive any financial remuneration nor will you have any rights to any possible commercial benefits obtained as a result of the research carried out.
IV. STORAGE OF YOUR GENETIC DATA AND USE OF SUCH DATA
1. Personal genetic data will be kept, duly coded (in such a way as to ensure that they cannot be linked to you by third parties, because the information that identifies you has been replaced or unlinked using a code), for a minimum period of five years from the date on which they were obtained (minimum storage period), after which you may request their deletion.
If no such request is made, the data will be kept, also duly coded, for as long as necessary to preserve your health or that of third parties related to you (maximum retention period).
In both cases (maximum and minimum storage period), and subject to your express consent, your coded genetic data may be used for research and teaching purposes, and the results of the research may also be published.
2.Apart from these cases, the genetic information resulting from the analysis of your DNA will be stored by 24Genetics in its database in an anonymized form, that is to say, without it being possible to identify you as the source subject (irreversibly dissociating the genetic data from the source subject, so that they cannot be associated with the latter, as an identified or identifiable person), because the link with any information that identifies the subject has been destroyed, or because such association requires an unreasonable effort, because the link with any information that identifies the subject has been destroyed, or because such association requires an unreasonable effort, understood as the use of a disproportionate amount of time, expense and labor), and this, solely and exclusively, for research and teaching purposes, and to be the subject of publications of the same nature.
Such anonymized data may be used for scientific research or teaching purposes, including publication for the same purpose, either by 24Genetics’ own personnel or by personnel authorized by 24Genetics.
And, likewise, 24Genetics may allow researchers or scientific or educational organizations to use, for scientific research or teaching purposes, such previously anonymized data stored in its database, as well as to publish the results of their research.