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Legal consent document

TELLMEGEN

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 [email protected] 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.

RISKS

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.

DNA Connect and third party raw data

Purpose of DNA Connect

DNA Connect by Genelink S.L. (hereafter, tellmeGen) exists to provide DNA and genealogy tools for comparison and research purposes. It is supported entirely by users, volunteers and researchers. DNA and genealogy research, by its very nature, requires the sharing of information. Therefore, users who participate in this Site agree that some of their information may be shared with other users.

Privacy

In today’s world, there are real dangers of identity theft, credit fraud, and so on. We try to strike a balance between these conflicting realities and the need to share information with other users. In short, if you require absolute privacy and security, you agree not to provide your personal information, raw data or genealogy data to the tellmeGen platform. If you do not agree and have already provided your personal information, raw data or genealogy data, you agree to delete it immediately.

Security

For tellmeGen, privacy, confidentiality and data security are an absolute requirement. For this reason we use the most advanced security protocols and the latest encryption technology, as well as physical, technical and administrative measures to maximize security in accordance with current legislation. All connections to and from our website are covered by the SSL cryptographic protocol.

  1. Our servers and data are hosted in the cloud. This allows us to have security systems with multilayer protection against DoS / DDoS, the latest technology in Cisco networks and fast access hard drives. All this complemented with backups of servers, database and all tellmeGen information.
  2. Our applications perform an automatic audit of changes, so that any changes to data are logged for action if they are not correct.
  3. The confidential data of tellmeGen users is encrypted so that no link can ever be established between genetic information, individuals and their personal data, as it is stored in encrypted form and this is only decrypted when necessary so that no link can ever be established between genetic information, individuals and personal data.

However, while tellmeGen has endeavored to create a secure and reliable Site for you, the complete confidentiality of any communication, material or personal information provided to tellmeGen through the Site cannot be guaranteed.

Information such as raw data, genealogy data and personal data may be stored for backup or retrieval purposes. When a registered tellmeGen user deletes or requests deletion of raw data, genealogy data and/or profile information, copies of that stored information will be deleted no later than 30 days after the user’s request.

Research

Provided that you give us express consent to do so, we may use your data in our own research, to develop or improve applications.

We at tellmeGen are convinced that each individual contribution combined with tens of thousands of others can make a difference and help make amazing scientific discoveries.

Your contribution through surveys or forms together with your genetic information and linked to that of many other people can make a difference in research.

E-mail addresses

All persons registering on the Site must provide a valid e-mail address to receive communications and notices from tellmeGen. You agree to maintain the security of your login information and to keep your e-mail address current.

DNA Data

Raw DNA data uploaded to tellmeGen is the property of the person who uploaded it. When you upload a file, it will be assigned a kit number at the end of the upload process. This number is unique to the individual raw genetic data, and will be used on the pages of this Site to identify your data. If you wish to contact the Site administrator regarding your data, you must provide the kit number associated with your data. You may request deletion of your personal data at any time by contacting us at [email protected]

Use of the results

The nature of genealogical research requires the exchange of information. This use must also be based on respect for the rights and privacy of other individuals. Anyone found to be using this Site without complying with this basis will be subject to an immediate ban with all data deleted. Examples include, but are not specifically limited to, spam mailing lists, posting other people’s usernames or other personal information without their permission. If relevant permission is not obtained from the individual in question, any personal information (including, without limitation, username and kit number) must be removed before republishing the results. Determination of any violation of this principle will be at the discretion of the tellmeGen administrators.

We cannot guarantee that users will not encounter other uses, from those described below to new ones, both genetic and non-genetic. For example, some of these possible uses of raw data, personal information and/or genealogical data by any registered tellmeGen user include, but are not limited to:

  • Uncovering identities;
  • Finding genetic matches (individuals sharing DNA);
  • Paternity and maternity testing;
  • Discovery of unknown or unidentified children, parents or siblings;
  • Discovery of other genetic and genealogical relatives, both known and unknown or unexpected; Discovery of ethnicity; Discovery of ethnic origin
  • Discovery of ethnic origin;
  • Discovery of a genetic relationship between parents;
  • Discovery of biological sex;
  • Discovery of medical information or physical traits;
  • Obtaining an e-mail address; and/or
  • Family tracing by third parties, such as law enforcement, to identify the perpetrator of a crime or to identify remains.

You understand that future genealogical and non-genealogical uses may develop, including uses that tellmeGen cannot predict or foresee. If you find any of these current or future uses unacceptable, please do not provide raw data to tellmeGen and delete any raw data you have already provided to this Site. It is our policy never to provide your genealogical data, personal information or email address to third parties, except when you provide your data for research projects. You have the right to access the personal information tellmeGen has collected about you. You may do the following at any time by contacting us at [email protected]

  • Ask not to receive further contact from us in the future;
  • See what information we have about you, if any;
  • Change, correct or have us delete any information we have about you (including personal information, raw data and genealogical data); and
  • Express any concerns you have about our use of your information.

Accuracy of Results

The results of the analyses and comparisons presented on this Site are provided “as is” and no representation is made as to their accuracy or usefulness. Changes may be made to the software and analysis tools from time to time that could change the results from those provided above. We make no promises about: (a) the functionality of the Site or the Site tools; or (b) the quality, accuracy, reliability or availability of the Site, including about any personal information, raw data or genealogical data provided to the Site. Any reliance you place on information found on the Site is strictly at your own risk. We disclaim all liability arising from any reliance placed on such information by you and by any other visitor to the Site, as well as by any person who may be informed of its contents. The operators of this Site are not responsible for the consequences of the use of the information provided on this Site.

Termination of Service

Anyone who wishes to have their raw data or genealogical data provided removed from the tellmeGen database may do so by requesting removal of their personal information at any time by contacting us at [email protected]

The administrators of tellmeGen reserve the right to remove any raw data, genealogical data or personal information from the database, for any reason, at any time, with or without notice. Any or all tellmeGen services may be terminated at any time, without notice, for any reason, at the discretion of the tellmeGen administrators.

Loss of Data

The operators of tellmeGen shall not be liable for loss of raw data, whether as a result of mechanical failure, software malfunction, human error or any other means.

Future

We cannot predict what the future holds for DNA or genealogy research. We cannot predict what the future of tellmeGen will be. It is possible that, in the future, tellmeGen may merge with or transfer its operations to other persons or entities. If this occurs, tellmeGen’s operating personnel will change. tellmeGen reserves the right to provide access to your data (including raw data, genealogy data, profile information and other personal information) to such other persons or entities, which may include persons not currently involved in tellmeGen’s operations. This Policy will continue to apply to the Site until you receive notice of changes to this Policy. If this possibility is not acceptable to you, you agree not to provide your personal information, raw data or genealogy data to tellmeGen. If you have already provided personal information, raw data or genealogy data, you agree to remove it from tellmeGen immediately.

Limitation of Liability

tellmeGen shall have no liability to you under this Policy, it being acknowledged and agreed that the Site is provided solely for your convenience. If the foregoing limitation of liability is held inapplicable, tellmeGen’s liability to you for any actionable event arising out of the Site or under this Policy shall be limited to any amounts paid by you to tellmeGen for the Site during the twelve (12) months prior to such actionable event. Notwithstanding anything to the contrary contained herein, this Policy shall not limit or exclude either party’s liability for the gross negligence or wilful misconduct of either party or its agents or employees, or for death or personal injury. The parties agree that the limitations and exclusions of liability in this Policy were freely negotiated and are an integral part of the bargain, in that the Site would not have been available for the same price and under the same terms and conditions if such limitations and exclusions of liability had not been included in this Policy. Some states or jurisdictions do not allow the exclusion of certain warranties, so some of the above limitations may not apply to you. In addition, some jurisdictions prohibit the exclusion or limitation of liability for consequential or incidental damages, so the above limitations may not apply to you.

Indemnification

You agree to indemnify, defend and hold harmless tellmeGen and any of its affiliates, any of their successors and assigns, and any of their respective officers, directors, employees, volunteers, contractors, consultants, agents, representatives, licensors, advertisers, suppliers and service providers, from any liability, loss, claim and expense, including reasonable attorneys’ fees, related to your violation of this Policy or your use or misuse of the Site. We reserve the right, at our own expense, to assume the exclusive defense and control of any matter otherwise subject to indemnification by you, in which event you will cooperate with us in asserting any available defenses.

Legal Information

In this section, we have included some legally required disclosures under GDPR privacy laws. We use GDPR with all of our clients to ensure the highest level of privacy.

For this section, we use the terms “personal data” and “processing” as defined in the GDPR, but “personal data” generally means information that can be used to individually identify an individual person, and “processing” generally covers actions that may be taken in relation to the data, such as collection, use, storage and disclosure. tellmeGen will be the controller of your personal data processed in connection with tellmeGen’s services.

Personal data of children under the age of 18

At tellmeGen, we only allow the registration and processing of data of children under the age of 18 if an adult applies to open the account and proves that he or she is the parent or legal guardian of the child.

We do not knowingly collect or solicit personal information from children under the age of 18. If you are a child under the age of 18, please do not attempt to register with or otherwise use tellmeGen or submit any personal information to us. If we learn that we have collected personal information from a child under the age of 18, we will delete that information as soon as possible. If you believe that a child under the age of 18 may have provided us with Personal Information, please contact us at [email protected]

The accounts of children under the age of 18 that are on the platform have been registered by first-degree relatives. To do so, they have had to provide supporting documentation. This documentation is reviewed by tellmeGen staff to ensure the first-degree relationship.

These accounts are under the responsibility of their first-degree relatives. tellmeGen is not responsible for any misuse of these accounts by such relatives.

EU Data Subject Rights

You have certain rights with respect to your personal data, including those set out below. For more information about these rights, or to submit a request, please email us at [email protected] Please note that, in some circumstances, we may not be able to fully comply with your request, for example, if it is frivolous or extremely impractical, if it jeopardizes the rights of others, or if it is not required by law, but in those circumstances, we will still respond to notify you of such a decision. In some cases, we may also need you to provide us with additional information, which may include personal data, if necessary to verify your identity and the nature of your request.

  • Access: You may request more information about the personal data we hold about you and request a copy of that personal data. If you are an account holder, you may also access some of your personal data by logging into your account.
  • Correction: If you believe that any of the personal information we hold about you is incorrect or incomplete, you may request that we correct or supplement it. You may also correct some of this information directly by logging in to your account.
  • Erasure: You may request that we delete some or all of your personal information from our systems.
  • Withdrawal of consent: If we are processing your personal data based on your consent (indicated at the time of collection of such data), you have the right to withdraw your consent at any time.
  • Portability: You may request a copy of your personal data in a machine-readable format. You may also request that we transfer the data to another data controller where technically feasible.
  • Objection: You may contact us to let us know that you object to our continued use or disclosure of your personal data for certain purposes.
  • Restriction of processing: You can ask us to restrict further processing of your personal data.

Personal Data Transfers

The tellmeGen service is operated by Genelink S.L. a company based in Europe. You acknowledge that any personal data you submit to, or that is collected by, the tellmeGen service is received by Genelink S.L. in Europe and will be hosted on European servers operated by Genelink S.L. or its service providers. This is necessary for Genelink S.L. to provide the tellmeGen services to you as you request and is set out in these terms of service and privacy policy. If you do not want your data to be processed and hosted in Europe, please do not use the tellmeGen services. Genelink S.L. takes the protection of your personal data very seriously and treats it in accordance with the importer’s obligations under the European Commission’s Standard Contractual Clauses for transfers of personal data between data controllers (as updated from time to time by the European Commission).

Data Retention

We retain your personal data for as long as you have an open account with us or as long as necessary to provide you with tellmeGen services. Please see the “Privacy and Security” section for more information.

Updates to this policy

We may update tellmeGen’s Terms of Service and Privacy Policy at any time. We will notify you of updates by posting a notice on the Site. You agree to review the updated terms and policy so by continuing to use the Site after we have posted a notice about the update, you agree to accept the changes to tellmeGen’s terms of service and privacy policy.