Personal data protection policy

Thank you for visiting our Website. The protection and security of our users’ personal data is a fundamental concern for Généthon. This Personal Data Protection Policy explains which data will be collected when you visit our Website and how it is processed.

You are currently connected to the website operated by Généthon (hereafter “Généthon”), an association registered under the SIRET number 40218752000018, located at 1bis, rue de l’Internationale, 91002 EVRY CEDEX (registered with the Evry prefecture), which is the data controller for personal data that may be collected via this website and processed for the purposes described below.

A. About us

Genethon is the AFM Telethon research laboratory specializing in gene therapy.

To ensure compliance with these rules, Genethon has appointed a Data Protection Officer (DPO), who is the main contact for the National Data Protection Commission [Commission nationale de l’informatique et des libertés, CNIL] and the organization’s point of contact for personal data protection issues.

Relevant information regarding your personal data and its processing will also be communicated to you at the time it is collected for each type of processing when you fill out our forms.

B. How you are impacted by this policy

  • You are a regular visitor to the Genethon website;
  • You have a question and have contacted Genethon through one of our contact forms;
  • You are a patient involved in a Genethon clinical trial;
  • You are a co-contractor of Genethon.

If your situation does not match one of the above profiles (you are affected by the disease, in contact with our support services, you are a volunteer, a scientist, etc.), the methods and purposes of processing your personal data are described, at the time of collection of your personal data. You can also get in touch with your usual contacts or ask your questions to the Data Protection Officer (

C. Why we collect your data

Depending on the type of inquiry, we may collect your data for various reasons (purposes):

  • To better respond to your requests: according to your questions (requests for information, partnership, participation in a clinical trial, training, internship, requests related to the activities of the Ecole ADN [EADN]…), your requests may be re-routed to the AFM Telethon or members of its galaxy;
  • In accordance with our legal obligations, for all job applications : to respond to your application, we collect a certain amount of personal data via the Linkedin Genethon account and the generic address in order to best address your applications for the position selected (when we receive your CV and cover letter);
  • On the basis of legitimate interest, for the purposes of administering the Genethon site: cookies;
  • On the basis of legitimate interest, for the purposes of good collaboration when setting up and carrying out a contract.

D. The personal data that we collect

Généthon collects the following data:

  • (a) Data collected when you visit our website: these are cookies. For more information, please refer to paragraph K. of this document;
  • (b) Data collected when you fill in the contact form(s) on our site: your name and e-mail address (which must be filled in) are collected in order to reply to you. We collect the date, method of contact (website) and reason for your request to transfer you to the relevant internal department for the most appropriate response. Your request may be forwarded to the AFM-Téléthon when the request falls under its competencies (contact form/School ADN form). Furthermore, you may provide us with additional personal data, using the free fields on our contact forms, depending on your request. Please note that we ask you to provide us only with data that may be useful in processing your request;
  • (c) Data collected when you apply for one of our job offers: the information contained in your CV (e.g. surname, first names, postal address, e-mail address, telephone number, photograph, education, employers, interests, etc.) as well as this same information, via the Genethon Linkedin account and the generic address, is collected in order to evaluate your application;
  • (d) Data collected when you are in contact with our services in the context of establishing and implementing a contract: surname, first name, professional e-mail address, professional telephone number.

E. Who has access to your data

  • 1. Contact form data
    In the context of data collected via contact forms, Genethon may transmit certain data to group partners (AFM-Telethon, I-Stem, CECS, AIM, CECS). Depending on the request, the contact form data concerned will be transmitted to the partner concerned, but will not be stored by Genethon. Genethon may may send data to the following parties:
    • (a) Entities of the Group (Partner)
      We may disclose personal data for the purposes described in this privacy policy with:
      – AFM Téléthon;
      – I-Stem: stem cell research center for genetic diseases;
      – Institute of Myology: European reference center for muscle research;
      – Genosafe: our service provider for the evaluation of product quality and safety.
    • (b) Our academic and institutional partners: INSERM, CNRS, universities (UEVE);
    • (c) Public authorities: in some cases, we may need to disclose your personal data in response to a court order, a summons, a law or regulation. We plan to collaborate with such requests, while taking the necessary measures to ensure that the person or entity making the request understands the confidential nature of the personal data entrusted to him/her/it. We also reserve the right to cooperate with public authorities as part of investigations and prosecutions of website visitors who violate our rules or exhibit harmful or unlawful behavior to other visitors or the personal data for which we are responsible.
  • 2. Data for other services
    Finally, in the context of using our services, we may employ service providers who are bound by contract to the same confidentiality and security obligations as Genethon. These service providers implement measures to guarantee optimal data protection. You can access the complete list of service providers who have access to your data by sending a request to our DPO at

F. How long your data is stored

Generally, Genethon only stores your personal data for the time required to achieve the purpose for which it was collected.

Your data is thus stored:

  • Up to 1 year for data required to manage the site: this includes visitor identities and connection data;
  • Up to 13 months for cookies;
  • Up to 1 year for data that you provided us via the contact form on the Genethon website;
  • Up to 5 years for training data from the DNA Learning Centre;
  • Up to 2 months for application data. On Linkedin, candidate CVs are stored for the duration of the recruitment process. Once recruitment has been finalized, CVs are deleted, except for those of candidates selected for their personal files.
  • For the duration of the contract, for data exchanged during the establishment and implementation of a contract. They may then be archived for a period in accordance with current legislation, depending on the purpose of the contract.

In the case of data transmitted to Galaxy’s members, this data is stored and used for a period in accordance with current legislation.

G. How to exercise your rights

In accordance with the French Data Protection Act of January 6, 1978, you have a right of access, rectification, opposition, limitation and, since the General Data Protection Regulation (RGPD) came into force on May 25, 2018, a right to erasure of your Personal Data and a right to their portability.

  • (1) You may ask to obtain a copy of your Personal Data as well as information on how the Personal Data is processed and its legal basis ;
  • (2) You may ask for your Personal Data to be corrected if it is inaccurate (including the right to complete the Personal Data if it is incomplete);
  • (3) You may ask for your Personal Data to be deleted (in certain cases, this right may only apply when the data is no longer necessary to achieve the purposes for which it was collected or processed);
  • (4) You may request to restrict the processing of your Personal Data when: (a) the accuracy of the Personal Data is disputed, (b) the processing is unlawful, (c) Genethon no longer needs your Personal Data but it is still necessary for the establishment, exercise or defense of legal claims;
  • (5) You may object to the processing of your Personal Data;
  • (6) You may withdraw your consent to the processing of your Personal Data.
  • (7) You may request to obtain or consult a copy of the appropriate measures taken to transfer your Personal Data to a third country or to an international organization.

To exercise these rights, please contact us at Please note that we reserve the right not to respond to manifestly unfounded or excessive requests.

In addition to the above rights, you also have the right to lodge a complaint with the National Data Protection Commission (CNIL) at the following address: 3 Place de Fontenoy, 75007 PARIS, France or by e-mail at

H. Transfers outside the European Union (UE)

If your data is transferred outside the European Union, Genethon will take appropriate measures to ensure that your Personal Data benefits from the same level of protection as if it had remained within the EU, including by entering into data transfer agreements, based on Standard Contractual Clauses approved by the European Commission as updated or revised.

You have the right to obtain information concerning the transfer mechanism by which your Personal Data is transferred outside the EU and the country to which this transfer is made by contacting .

Genethon will also respond to requests for information if required to do so by law, or if such disclosure is necessary to protect our rights and/or to comply with a legal proceeding or court order.

I. Security measures

We implement all technical, organizational and structural measures to ensure a high level of protection for the use of your data. However, we would like to point out that no data storage system is infallible. If you have any difficulties concerning the management of your personal data, you can contact the Data Protection Officer at the following e-mail address: or at the following postal address:

Data Protection Officer
1, rue de l’Internationale,
91002 EVRY

J. External links

The Website may contain links to third-party sites. Genethon does not monitor these sites. As a result, Genethon cannot be held responsible for their data protection practices. We therefore encourage you to check the data protection policies of these third-party sites. This policy applies only to Personal Data collected by our websites or in the course of our activities.

K. Cookies management policy

A cookie is a small file that may be placed on your device’s hard drive or on the website. We collect cookies to facilitate access to our services. You are not obliged to accept a cookie, and you can choose which cookie to accept by changing your browser settings so that it does not accept cookies. To modify these settings, go to your browser’s “Options” or “Preferences” menu.

Cookies settings in Internet Explorer
Cookies settings in Mozilla Firefox
Cookies settings in Google Chrome
Cookies settings in Opera
Cookies settings in Safari

For more information on the use, management and deletion of cookies, for all browser types, please consult the following link:

We collect several types of cookies:

  • (a) Nominative cookies: cookies defined by the website displayed in the browser window; they are identified by the domain name in the address bar of the browser window;
  • (b) Temporary cookies: cookies that expire at the end of the browser session, between the moment you open your browser window and the moment you close it;
  • (c) Permanent cookies: cookies that are saved on the device at the end of a browsing session, and which are therefore used to remember your preferences or actions when you return to our website.

In accordance with current regulations, this data can only be stored for a maximum of 13 months.

You will find below the list of cookies present on the Genethon website:

cookielawinfo-checkbox-analytique1 yearThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytic".
cookielawinfo-checkbox-autres1 yearThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Other".
cookielawinfo-checkbox-fonctionnel1 yearThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Functional".
cookielawinfo-checkbox-necessaire1 yearThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Necessary".
cookielawinfo-checkbox-performance-fr1 yearThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance".
cookielawinfo-checkbox-publicite1 anThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Advertisement".
CookieLawInfoConsent1 yearSaves the default button state of the corresponding cookie category
viewed_cookie_policy1 yearThe cookie is set by the GDPR Cookie Consent plugin to store whether or not the user has consented to the use of cookies. It does not store any personal data.
wp-wpml_current_languageSessionUse by WPML, stores the current language. This cookie is enabled by default on sites that use the language filtering functionality.
_ga2 yearsThe _ga cookie, installed by Google Analytics, calculates visitor, session and campaign data and also keeps track of site usage for the site's analytics report. The cookie stores information anonymously and assigns a randomly generated number to recognize unique visitors.
_gid1 dayInstalled by Google Analytics, _gid cookie stores information on how visitors use a website, while also creating an analytics report of the website's performance. Some of the data that are collected include the number of visitors, their source, and the pages they visit anonymously.
_pk_id.1.5f1513 monthsUsed by Matomo to store a few details about the user such as the unique visitor ID
_pk_ses.1.5f1530 mnShort lived cookies used by Matomo to temporarily store data for the visit
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L. Privacy policy updates

We may amend this Privacy Policy at any time to take account of changes in the law and/or in our personal data protection practices.

Last update : November 24, 2023