Before contracting the services offered by Genelink, S.L. (henceforth, “tellmeGen”), you should read, agree to and accept the terms of this informed consent and legal agreement (henceforth “Consent”). Specifically, by this Consent, you state and expressly accept that you : (i) are informed of the process by which tellmeGen carries out its services; (ii) are conscious of the potential benefits, limitations and risks associated –directly or indirectly- with the same. It is necessary to clearly understand: (i) the context of the genetic information to which, through the services provided, tellmeGen has access; and (ii) the possible consequences derived from that knowledge.
Purpose of the genetic analysis by tellmeGen that you requested. The service provided by tellmeGan for the analysis and interpretation that you requested is designed with a purely informative purpose used by tellmeGen and based on the available scientific evidence. Specifically, through the service provided by tellmeGen, you will be informed of the aspects which promote the prevention and/or the treatment of certain conditions, pathologies and/or illnesses (genetic predispositions to suffer distinct illnesses, drug metabolism capacity and response to treatment or possibility of being a carrier of hereditary disorders). You declare to be aware of and accept that in providing your saliva sample and receiving the results of your genetic data, this does not imply acquisition of any rights on the scientific research or the services or products that are developed by tellmeGen or by organizations or persons associated with tellmeGen.
Saliva samplesprovided to tellmeGen. You guarantee that the saliva sample provided is your own. Accordingly, it is understood that tellmeGen only provides a service to private individuals. In this regard, you guarantee that you do not act for a third party including, and not limited to, insurance companies, companies related –directly or indirectly- to healthcare or any other type of company or private individual that could be interested in obtaining information about a policy holder, employee, director or any other person without prior authorization. In addition, if you reside outside Spain, on acceptance of the present Consent or any other documents necessary for contracting services, you confirm specifically that you are not subject to any prohibition or legal restriction related to sending saliva samples from your country of residence or, in general, to contracting any genetic services such as those you are requesting from tellmeGen. Also, you acknowledge and accept that providing your saliva sample and its subsequent processing of your genetic data does not imply acquisition by you of any rights on the scientific research or the services or products that tellmeGen or organizations or persons associated with tellmeGen may develop.
Saliva samples taken from children for the provision of services. If you sign this document on behalf of a minor, declares that you hold the custody of the child, acting on its behalf and you have not been deprived of that custody by virtue of a final judgment. Furthermore, you state that the saliva sample corresponds to the minor on whose behalf you act. In the absence of parents holders of parental authority, only the person exercising custody of the child may contract in its name and submit saliva samples. Persons which contract tellmeGen services on behalf of a child must provide the necessary documents to prove the representation of the child and the statements made to formalize the hiring, stating that they are genuine, complete, true and updated. In particular, without limitation, it may be provided the Family Book, parents Identity Cards, testimony of court’s decision or civil registration certificate.
Deoxyribonucleic acid Analysis (henceforth, “DNA”). You give your permission to tellmeGen, its employees, directors, managers, contractors, subcontractors and collaborators to carry out the requested services for DNA analysis of your saliva sample. For these purposes, you are informed that the current data processing center contracted by tellmeGen have all the necessary sanitary licenses for the analysis.
Results of the genetic analysis (report). You authorize tellmeGen to pass on to you –partially or entirely – the results (report) of your DNA analysis as well as to those persons for whom you have given previous written authorization. You acknowledge and accept that the information provided by tellmeGen after carrying out your genetic analysis as requested can be positive or negative. Consequently, you recognize and accept that you are aware that said furnished information can be unexpected and can cause situations of emotional stress. Nevertheless, you also manifest that you know and accept that in the case that your genetic information indicates a higher risk than the average for developing a determined pathology or illness does not mean that irremediably you will develop it. Likewise, you state that you understand that as research in genetic material advances, in order to more completely evaluate the significance and the information relative to your DNA within the context of said advances, it could be necessary to reuse these services.
Genetic counseling. As a client of tellmeGen, you have access through the website www.tellmegen.com (or any other site set up for these purposes by tellmeGen) to the interpretation of your genetic analysis. However, in the case of needing further additional clarification or having any doubts or uneasiness derived from your genetic analysis, you can contact tellmeGen at the email address firstname.lastname@example.org where specialized personnel will try to resolve your questions. In any event, as previously stated, the provision of services by tellmeGen does not pretend to be nor can be a substitute for personalized and particular attention by healthcare professionals.
PROTECTION OF GENETIC DATA
Your genetic information obtained as a consequence of the services rendered by tellmeGen is subject to our Protection of Personal Data Policy [to learn more about this Protection of Personal Data Policy, click here]. Summarizing, as stated in the Protection of Personal Data Policy, tellmeGen watches out for your right to store and to consult your personal genetic information confidentially and safely. As for genetic information for minors, only their parents or legal guardians if they have parental or legal authority, can access said information. Minors can also access their information, if on reaching legal age, they so request and tellmeGen still has said information.
Genetic data. The laboratory contracted by tellmeGen to process the saliva sample will analyze your DNA with the sole objective of determining your genetic information. Neither said laboratory nor tellmeGen will research your saliva sample for any other biological or chemical agent, marker, or component that is not your DNA. Likewise, said laboratory will not have access to any of your personal data (including full name) since the data will be subject to a dissociation process. Only a unique bar code will permit tellmeGen to link the genetic information derived from your saliva sample to your account as a client of tellmeGen. In any case, and for greater security, two (2) months after finalizing the requested analysis, the saliva sample given and the remaining DNA will be destroyed.
Security. In fulfillment of the current legislation and of the internal policies of tellmeGen, rigorous security measure will be employed to impede unauthorized access, transmission or destruction of your data. This security system includes our regular system audits and security measures.
Confidentiality. In fulfillment of that stated in the Spanish legislature regarding the protection of personal data and specifically, as per that stated in the established Spanish law 15/1999, dealing with the Protection of Personal Data (hereafter LOPD), and the Royal Decree 1720/2007 of 21 December by approving the Regulation for the development of the LOPD (henceforth, LOPD Regulation), tellmeGen informs the user that the personal data given to us will be used with total confidentiality and incorporated in the corresponding files owned by tellmeGen and duly registered with the General registry of the Spanish Agency for the Protection of Data (hereafter “AEPD”), with the objective of adequately providing the contracted service. Likewise in accord with the stated in the LOPD Regulation, the user is informed that he/she can exercise his/her rights regarding personal data of access, rectification, cancelation and opposition stored in the files of tellmeGen in writing and, with proof of identity, to tellmeGen.
In the case of minors, their personal data and genetic information will be used in a likewise confidential manner, prioritizing above all, the interests of the minor over any other, in accord with that stated in the Spanish law 1/1996 of 15 January of Legal Protection for Children.
For additional information, click here to consult our Protection of Personal Data Policy.
Research. Please put an X in the box to indicate your agreement:
□ I authorize tellmeGen to cede the anonymous data derived from the analysis of my DNA for any and all studies, research and statistics it deems necessary.
□ I do not authorize tellmeGen to cede the anonymous data derived from the analysis of my DNA.
In the case that that you mark the first box, you manifest that you understand and accept for tellmeGen to promote the advance of scientific research and consequently you agree for tellmeGen to carry out said research with your data under the following stipulations:
-Data storage: You specifically authorize that your genetic and/or phenotypic information obtained from the contracting of the products and/or services of tellmeGen be stored in its data base in anonymous format be used by tellmeGen personnel or personnel authorized by tellmeGen to carry out research using the said data base. -Associated research: You specifically authorize that tellmeGen may enter into agreements, in such conditions as it deems appropriate, with other organizations or persons that carry out scientific investigations. For this, you give your disinterested permission to tellmeGen as well as to other organizations or persons to carry out said research using the anonymous data gathered by tellmeGen and to publish the results of the same. In no case shall your identity be revealed nor be known by the organizations or persons with whom tellmeGen reaches agreements to promote scientific research in the biomedical/genetic field. You agree that the health professional who recommends the study and registers you on the tellmeGen platform has access to your raw genetic data as well as the interpretation of these, regardless of the country of origin. TellmeGen is not responsible for the possible misuse by these professionals of the raw genetic data, or of possible misinterpretations that apply to these raw genetic data.
TellmeGen understands that it is of great interest to help its clients to access and understand their genetic information. However, accessing and understanding genetic information is complex and not free from risks. To this respect, by signing this Agreement, you manifest knowledge and acceptance of these possible risks. For illustration purposes only, below you will find some of the considerations that you have to take into account and accept through this Consent, given prior to the hiring of tellmeGen’s services:
Discovery of unexpected information. It is very probable that you will find genetic information about yourself that you did not expect. Said genetic information could provoke under certain situations emotional stress and in some cases can even alter lives. Specifically, you can discover things about yourself that could worry you. For example, you might have a greater possibility than the average of a particular segment of the population to develop a certain condition, pathology or illness. In this case, you have the right to revoke this Agreement at any time in writing (this right does not exempt you from the economic obligations assumed on contracting tellmeGen’s services).
Minimum analysis errors. Without prejudice to that expressed in the following paragraph, you are informed that tellmeGen follows rigorous quality protocols in the DNA analysis process. Nevertheless, an extremely small proportion (<0.05%) of the data generated during the process carried out in the external laboratory of tellmeGen can be incorrect or cannot be interpreted.
Future genetic research. Future scientific research in genetic material can alter –totally or partially- the interpretation of your DNA since new genetic markers can be discovered related to the risk of suffering divers conditions, pathologies or illnesses.
Non-sharing of genetic data. The genetic data that is shared with third parties whether they come from a service carried out by tellmeGen or from other sources may used against your own interests. You are informed that tellmeGen strongly recommends that you do not share your genetic information with third parties (including family members, friends, work colleagues, etc). Even in the event that you decide to share your genetic information with health care professionals, you run the risk that said information can become part of your medical history and, because of this, could be in the future accessible to undesired third parties (for example, health care provider service companies or insurance companies). You declare that you understand that if you share now minor or seemingly unimportant genetic information, said information could be relevant in the future when genetic research has advanced and new discoveries have been made (for example, the discovery of new genetic markers related to the risk of suffering divers conditions, pathologies or illnesses). In any case, you acknowledge that you will: (i) assume responsibility for the possible consequences derived from sharing access to your genetic data with third parties; and (ii) exonerate tellmGen, its employees, managers, directors, contractors, subcontractors, collaborators, successors, and authorized representatives and consider them free from any responsibility derived from (A) the use or transmission of any information provided by you and/or obtained as a consequence of a service requested from tellmeGen; and (B) the transmission or utilization of your genetic information or other personal data provided in the event that you share said information with third parties- whether it be intentional or inadvertently, or to third parties for a diagnosis or other purposes.