Legal consent document
tellmeGen™
Acceptance of Informed Consent
Before contracting the service provided by Genelink, S.L. (hereinafter, "tellmeGen"), you must read, agree to, and expressly accept the terms of this legal agreement and informed consent (hereinafter, the "Consent"). Through this Consent, you expressly acknowledge and accept: 1. Knowing the process through which tellmeGen will provide the service. 2. Being aware of the benefits, limitations, and potential risks associated – directly or indirectly – with it. 3. Clearly understanding the context of the genetic information that you will have access to through tellmeGen's service. 4. Knowing the possible consequences of having such knowledge.
Purpose of Genetic Analysis
The main purpose of this analysis is to provide you with relevant and up-to-date information that contributes to the prevention and management of possible health conditions, pathologies, and diseases. This includes, but is not limited to, genetic predisposition to various diseases, the capacity for drug metabolism and response to specific treatments, as well as the possibility of being a carrier of hereditary diseases.
By accepting this document, you acknowledge and agree that the genetic analysis service provided by tellmeGen acts as a prescription. This service is aimed at the prevention, treatment, and self-knowledge of health conditions based on your personal genetic information. You expressly acknowledge and agree that the information obtained through the genetic analysis service you request from tellmeGen is not intended to diagnose any condition, pathology, or disease and, under no circumstances, is intended to or can replace personalized and specific care from any healthcare professionals. It is important to emphasize that while this service provides valuable information, it does not replace clinical analysis or professional medical consultation.
Genetic Counseling Clause
Pre-test Genetic Counseling
By accepting this informed consent, you acknowledge that you have received and understood all the information provided in this document about the tellmeGen genetic test. This consent acts as pre-test genetic counseling, explaining the purpose of the test, the possible results, the medical and personal implications, as well as the associated risks and limitations.
You understand that this test may reveal information about your genetic susceptibility to various health conditions and that interpretation of these results should be done with care and in the context of your personal and family medical history. You agree that you have understood the full implications of the tellmeGen genetic test.
If you have any questions or need further genetic counseling, you can consult our geneticists via email at [email protected], through chat on our website, or by phone. Our team is available to help you better understand your results and provide the necessary guidance.
Post-test Genetic Counseling
As a tellmeGen customer, you will have access through the website genportal.tellmegen.com (or any other provided by tellmeGen) to an interpretation of your genetic analysis. However, if you need any additional clarification or have any questions or concerns arising from your genetic analysis, you can purchase a personalized consultation or report at https://www.tellmegen.com/en/tellmegen-consultation, depending on the required service, where specialized personnel will address your queries.
In any case, as stated above, the provision of the service by tellmeGen is not intended to and cannot replace the personalized and individualized attention of any healthcare professionals. Users are strongly advised to consult with their physician or a genetic specialist for additional interpretation and advice, especially if the results indicate an inclination towards significant health conditions.
Additional Note for Users in Germany and Other Countries with Specific Regulations
For users in Germany and other countries with specific regulations on genetic counseling, it is strongly recommended to receive additional genetic counseling in accordance with local laws. Our team of geneticists is available for further consultations via email at [email protected], through chat on our website, or by phone. This is especially important to ensure that you receive the appropriate support to fully understand the results and their implications for your health.
Saliva samples provided to tellmeGen
You warrant that the saliva sample provided is your own. For relevant purposes, it is noted that tellmeGen only provides services to individuals. In this regard, you guarantee that you are not acting on behalf of any third party including, but not limited to, insurance companies, companies related – directly or indirectly – to the healthcare field, or any other type of company or individual who might have an interest in obtaining information about an insured person, employee, executive, or any other persons without the necessary prior authorization.
Additionally, if you reside outside of Spain, by accepting this Consent or any other documents necessary for contracting the service, you expressly confirm that you are not subject to any legal prohibitions or restrictions including – but not limited to – prohibitions or restrictions related to the sending of saliva samples from your country of residence or, in general, any prohibitions or restrictions related – directly or indirectly – to the contracting of genetic services like the one requested from tellmeGen.
Additionally, you acknowledge and agree that providing your saliva sample and the processing of your genetic data does not grant you any rights over the scientific research or the services or products developed by tellmeGen or by organizations or individuals associated with tellmeGen.
Saliva samples taken from children for the provision of services
If you sign this document on behalf of a minor, you declare that you hold parental authority over the minor, that you act on their behalf, and that you have not been deprived of such authority by a court order. Likewise, you declare that the saliva sample corresponds to the minor on whose behalf you are acting. In the absence of parents holding parental authority, only the person exercising guardianship of the minor may contract on their behalf and submit the saliva samples. Those who contract on behalf of the minor must provide the necessary documents to prove the representation of the minor and the statements made when formalizing the contracting of tellmeGen's services, declaring that they are authentic, complete, true, and updated. In particular, without limitation, the Family Book, the parents' ID, a copy of a court order, or a Civil Registry certificate must be provided.
Deoxyribonucleic acid analysis (DNA)
You give your permission to tellmeGen, its employees, managers, directors, contractors, subcontractors, and collaborators to carry out the requested services of analyzing the DNA extracted from your saliva sample. For all relevant purposes, you are informed that the data processing centers contracted by tellmeGen have all the necessary health licenses to perform the analysis.
Results of the genetic analysis (report)
You authorize tellmeGen to transmit, in whole or in part, the results (report) of your DNA analysis to you and to persons you authorize in advance and in writing. You represent and agree that the information provided by tellmeGen after performing your genetic analysis as requested may be positive or negative. Accordingly, you acknowledge and agree that you are aware that such information provided may be unexpected and may cause you emotional stress. However, you also acknowledge and accept that in the event that your genetic information indicates an above-average risk for a particular condition, it does not mean that you will inevitably develop that condition. You further understand that, as genetic research advances, in order to more fully assess the meaning and information regarding your DNA in the context of such advances, you may need to call upon these services again.
Protection of genetic data
Your genetic information obtained as a result of the service provided by tellmeGen is subject to our Personal Data Protection Policy [to view this Personal Data Protection Policy click here]. In summary, as indicated in this Personal Data Protection Policy, tellmeGen ensures your right to store and consult your genetic and personal information confidentially and securely. Regarding the genetic information of minors, only their parents exercising parental authority or, where applicable, the guardian will have access to it. Minors will also have access if, upon reaching the age of majority, they request it and tellmeGen still retains it.
Genetic data
The laboratory contracted by tellmeGen to process your saliva sample will analyze your DNA solely for the purpose of determining your genetic information. Neither the laboratory nor tellmeGen will search your saliva for any other agent, marker, or biological or chemical component other than your DNA. Additionally, the laboratory will not have access to any of your personal data (including your name and surname) as the data will undergo a dissociation process. A unique barcode will allow tellmeGen to link the genetic data derived from your saliva sample to your tellmeGen customer account. In any case, for greater security, three (3) months after the requested analysis is completed, the remnants of the provided DNA and saliva will be destroyed.
Security
In compliance with the applicable regulations and tellmeGen's own internal policies, stringent security measures will be employed to prevent unauthorized access or unauthorized modification, transmission, or destruction of your data. This security system includes regular audits of our systems and security measures.
Confidentiality
In compliance with the provisions of the Spanish regulations on the protection of personal data, and specifically in accordance with Organic Law 15/1999 on the Protection of Personal Data (LOPD) and Royal Decree 1720/2007 of December 21, which approves the Regulation implementing the LOPD, tellmeGen informs you that the personal data you provide will be used in complete confidentiality and incorporated into the corresponding files owned by tellmeGen, duly registered with the General Registry of the Spanish Data Protection Agency (AEPD), with the purpose of adequately providing the contracted service. Likewise, in compliance with the provisions of the LOPD Regulation, you are informed that you may exercise your rights of access, rectification, cancellation, and opposition regarding your personal data contained in tellmeGen's files by writing, proving your identity, and addressing tellmeGen. In the case of minors, their personal data and genetic information will also be used confidentially, always prioritizing the minor's interest over any other in accordance with the provisions of Organic Law 1/1996 of January 15, on the Legal Protection of Minors. For more information, you can consult our Personal Data Protection Policy by clicking here.
Validity of Informed Consent
By accepting this consent, you confirm that you have read and understood all the information provided and that you freely give your consent to undergo the genetic test. This consent is valid until you decide to withdraw it, which you can do at any time by contacting us at [email protected].
Research
tellmeGen is particularly committed to genetic research and has reached agreements to conduct studies and research with prestigious entities in the sector. To this end, we request your authorization to use the data collected by tellmeGen completely anonymously for transfer to the entities or individuals with whom the company has reached the aforementioned agreements, allowing them access to your raw genetic data as well as the interpretation of these data, regardless of the country of origin. This data processing will always be based on the provisions of Article 9.2(j) of the GDPR. I expressly authorize tellmeGen to transfer the anonymous data derived from my DNA analysis for any studies, research, and statistics deemed necessary.
Risks
tellmeGen understands that it is of great interest to help its customers access and understand their genetic information. However, this process of accessing and understanding genetic information is complex and not without risks. In this regard, you acknowledge and accept these potential risks. For illustrative purposes only, several considerations that you should take into account and accept through this Consent granted before completing the process of contracting tellmeGen's service are presented below:
Discovery of unexpected information
It is very likely that you will obtain genetic information about yourself that you do not expect. Such genetic information may cause you emotional stress and, in certain cases, could be life-altering. In particular, you may discover things about yourself that could cause you concern. For example, you may be more likely than average in a certain population to have a certain condition. In this regard, you have the right to revoke this Consent at any time upon written request (this right does not relieve you of the financial obligations you assumed when you contracted the service with tellmeGen).
Minimum analysis errors
Notwithstanding the provisions of the following paragraph, you are informed that tellmeGen follows strict quality protocols in the DNA analysis process. However, an extremely small percentage (<0.05%) of the data generated during the process carried out in the external tellmeGen laboratory may be incorrect or uninterpretable.
Future genetic research
Future scientific research in the field of genetics may alter—totally or partially—the interpretation of your DNA, as new genetic markers may be discovered in relation to the risk of various conditions, pathologies, or diseases.
Non-sharing of genetic data
The genetic data you share with third parties—whether from the service provided by tellmeGen or other sources—could be used against your own interests. You are hereby informed that tellmeGen strongly recommends that you do not share your genetic information with third parties (including family, friends, co-workers). Even if you decide to share your genetic information with a healthcare professional, you risk that this information may become part of your medical history and, through that route, could eventually become accessible to undesired third parties (e.g., healthcare service providers or insurance companies).
You acknowledge that even if you share minor or seemingly unimportant genetic information at the time it is shared, this information could become relevant in the future as genetic research advances and new discoveries are made (e.g., the discovery of new genetic markers related to the risk of various conditions, pathologies, and diseases). In any case, you agree to: (i) assume responsibility for the possible consequences of sharing your genetic data with third parties; and (ii) release and hold harmless tellmeGen, its employees, administrators, directors, contractors, subcontractors, collaborators, successors, and assignees from any liability arising from: (A) the use or transmission of any information provided by you and/or obtained as a result of the service requested from tellmeGen; and (B) the transmission or use of your genetic information or other personal data provided in the event that you have shared this information with third parties—whether intentionally or inadvertently—for their interpretation or other purposes.
Country-specific regulations
Consumer regulations require that the user be aware of the terms and conditions of contracting the product offered through the Website from the country of purchase. We disclaim all liability arising from the user's ignorance of this information.
Other Critical Elements
1. Right to Withdraw Consent: You have the right to withdraw this consent at any time, without affecting the legality of the processing based on the consent prior to its withdrawal. To exercise this right, you can contact us through the means specified in our Privacy Policy.
2. International Data Transfer: Personal and genetic data may be transferred and stored on servers located outside your country of residence. TellmeGen is committed to ensuring that such transfers comply with all applicable data protection regulations.
3. Additional Queries and Advice: For additional queries or clarifications about your genetic data and analysis results, you can contact our geneticists via email at [email protected], through the chat on our website, or by phone.
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.
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.
Our applications perform an automatic audit of changes, so that any changes to data are logged for action if they are not correct.
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 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.
