Privacy Policy
OUR PERSONAL DATA PROTECTION POLICY
Thank you for visiting our Website. The protection and security of our users’ personal data is of key importance to GenoTher. This Personal Data Protection Policy explains what data is collected when you visit our Website and how it is processed.
You are currently connected to the website www.genother.org, operated by the GenoTher Association.
GenoTher is the data controller for the personal data that may be collected through this Website and processed for the purposes described below.
A. WHO ARE WE?
GenoTher is an association whose mission is to promote the development of the French genetic medicine sector and to create a world-class competitiveness hub covering all aspects
from research to industrialization, production, access to treatments for patients, economic value creation, business creation and development, and training development, in order to
meet the needs of the sector. The mission and activities of the GenoTher Association are carried out in compliance with national and international laws and ethical recommendations. To ensure compliance with these rules, GenoTher has appointed an internal contact person for matters relating to the protection of personal data.
B. HOW DOES THIS POLICY APPLY TO YOU?
This Policy applies to you if:
- You are a regular visitor to the GenoTher website;
- You wish to contact us via the contact form available on the GenoTher website;
- You are applying for one of our job vacancies;
- You are a co-contractor or future co-contractor of GenoTher.
If you do not fall within any of the categories listed above, the terms and purposes of the processing of your personal data are described separately at the time your personal data is collected. You may also contact your usual points of contact or send your questions to GenoTher’s data protection contact person at dataprivacy@genother.org.
C. WHY DO WE COLLECT YOUR DATA?
Depending on the type of request, we may collect your data for different reasons, or purposes:
- On the basis of legitimate interest, in order to respond to your requests as effectively as possible: depending on the nature of your questions, such as requests for information,
partnership opportunities, employment, etc., your requests may be redirected to the relevant GenoTher members listed below.
- On the basis of legitimate interest, for the administration of the Généthon website: cookies.
- In accordance with our legal obligations, for job applications: in order to respond to your application, we collect a number of personal data via the GenoTher LinkedIn account in order to process your application for the selected position as effectively as possible, when we receive your CV and cover letter.
- On the basis of legitimate interest, where necessary for proper collaboration in the establishment and performance of a contract.
D. WHAT PERSONAL DATA DO WE COLLECT?
GenoTher collects the following data:
a. Data collected when you visit our Website:
This refers to cookies. For more information, please refer to section K of this document.
b. Data collected when you complete the contact form(s) on our Website:
Your name and email address, which are mandatory fields, are collected in order to redirect you to the relevant internal department so that you may receive the most appropriate
response. You may also provide us with additional personal data through the free-text fields in our contact forms, depending on your request. Please note that we invite you to provide only the data that may be useful for processing your request.
c. Data collected when you apply for one of our job vacancies:
The information contained in your CV, such as surname, first name, postal address, email address, telephone number, photograph, education, employers, interests, etc., as well as the
same information collected via the GenoTher LinkedIn account, is collected in order to assess your application.
d. Data collected when you are in contact with our teams in connection with the establishment and performance of a contract: Surname, first name, professional email address and professional telephone number.
E. WHO HAS ACCESS TO YOUR DATA?
1. Data from contact forms
Your data collected via the contact forms may be shared with all members of the GenoTher Association. Depending on the request, the data from the contact forms will be forwarded to
the relevant member.
The GenoTher members that may receive your data are as follows:
a. AFM-Téléthon
b. Ampleia
c. Assistance Publique – Hôpitaux de Paris (AP-HP)
d. Association Institut de Myologie (AIM)
e. CentraleSupélec
f. Communauté d’Agglomération Grand Paris Sud Seine Essonne Sénart
g. Commune d’Évry-Courcouronnes
h. Département de l’Essonne
i. École Supérieure de Physique et de Chimie Industrielles (ESPCI)
j. French State
k. Généthon
l. Genopole
m. Institut de Formation Professionnelle Industrielle (IMT Group)
n. Imagine Institute
o. Institut National de la Santé et de la Recherche Médicale (INSERM)
p. Institut National des Sciences Appliquées de Toulouse
q. Polytheragene
r. Région Île-de-France
s. Samabriva
t. Spark Therapeutics
u. Thales
v. Université Évry – Paris-Saclay
w. Université Paris-Est Créteil (UPEC)
x. WhiteLab Genomics
y. YposKesi
In certain cases, we may be required to disclose your personal data in response to a court order, subpoena, law or regulation. We intend to cooperate with such requests, while taking
the necessary steps to ensure that the requesting party understands the confidential nature of the personal data entrusted to it. We also reserve the right to cooperate with public authorities in investigations and proceedings relating to website visitors who violate our rules or engage in harmful or unlawful conduct toward other visitors or toward the personal data for which we are responsible.
2. Specific case: GenoTher Summit 2026
As part of the GenoTher Summit 2026, certain personal data may be collected through the event registration process, including identification and professional contact details such as
name, surname, organization, job title, professional email address and, where applicable, telephone number.
During registration, participants may be invited to give their explicit consent for their contact details to be shared with selected event sponsors and partners for networking and business development purposes. This sharing will only take place if the participant has actively ticked the relevant consent box.
The sponsors and partners that may receive such data in connection with their GenoTher Summit 2026 sponsorship package are: Généthon, AcroBiosystems, Cytiva and Quantoom
Biosciences. Only the data of participants who have given their consent will be shared. The data of participants who have not ticked the consent box will not be transmitted to these sponsors or partners.
Where applicable, the data will be shared through a secure file made available only to the authorized recipients listed above. These recipients are responsible for processing the data they receive in accordance with applicable personal data protection laws and for using it only for the purposes for which consent was given.
3. Data in connection with other services
Finally, in the context of the use of our services, we may use service providers who are contractually bound by the same confidentiality and security obligations as GenoTher. These
service providers implement measures to ensure optimal data protection. You may request access to the full list of service providers that have access to your data by sending a request
F. HOW LONG DO WE KEEP YOUR DATA?
As a general rule, GenoTher retains your Personal Data only for as long as necessary to achieve the purposes for which it was collected.
Your data is therefore retained:
- For up to 1 year for data required for website management, namely visitor identities and connection data;
- For up to a maximum of 13 months for cookies;
- For up to 1 year for data that you have provided through the GenoTher website contact form;
- For up to 2 months for application data. On LinkedIn, candidates’ CVs are retained for the duration of the recruitment process. Once the recruitment process has been completed, CVs are deleted, except for that of the selected candidate, which is retained for the creation of their personnel file.
- For the duration of the contract, for data exchanged during the establishment and performance of a contract.
Your data may then be archived for a period compliant with applicable legislation.
G. HOW CAN YOU EXERCISE YOUR RIGHTS IN PRACTICE?
In accordance with the French Data Protection Act of 6 January 1978, known as the “Informatique et Libertés” Law, you have the right to access, rectify, object to and restrict the processing of your personal data. Since the entry into force of the General Data Protection Regulation (GDPR) on 25 May 2018, you also have the right to erasure of your personal data and the right to data portability.
1. You may request a copy of your Personal Data, as well as information on the methods used to process the personal data and the legal basis for such processing.
2. You may request that your Personal Data be corrected if it is inaccurate, including the right to have incomplete Personal Data completed.
3. You may request the erasure of your Personal Data. In certain cases, this right may only apply when the data is no longer necessary for the purposes for which it was collected or
processed.
4. You may request the restriction of the processing of your Personal Data where:
a. the accuracy of the Personal Data is disputed;
b. the processing is unlawful;
c. GenoTher 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 request to withdraw your consent to the processing of your Personal Data.
7. You may request to obtain or review a copy of the appropriate safeguards implemented for transferring your Personal Data to a third country or to an international organization.
To exercise these rights, please contact us at the following email address: dataprivacy@genother.org.
Please note that we reserve the right not to respond to requests that are manifestly unfounded or excessive. In addition to the rights mentioned above, you also have the right to lodge a complaint with the French Data Protection Authority, the Commission Nationale de l’Informatique et des Libertés (CNIL), at the following address: 3 Place de Fontenoy, 75007 Paris, France, or via www.cnil.fr.
H. TRANSFER OUTSIDE THE EUROPEAN UNION (EU)
If your data is transferred outside the European Union, GenoTher will take appropriate measures to ensure that your personal data benefits from the same level of protection as it
would 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 about the transfer mechanism under which your Personal Data is transferred outside the EU and the country to which the transfer is made by contacting dataprivacy@genother.org.
I. SECURITY MEASURES
We implement all technical, organizational and structural measures necessary to ensure a high, adequate and appropriate level of protection for the use of your data. However, we wish
to inform you that no data storage system is infallible. If you experience any difficulty regarding the management of your personal data, you may contact and send your questions
to the data protection contact person at the following email address: dataprivacy@genother.org.
J. EXTERNAL LINKS
The Website may contain links to third-party websites. GenoTher has no control over these
websites. Accordingly, GenoTher cannot be held responsible for their data protection practices. We therefore encourage you to review the data protection policies of these third-party websites. This Policy applies only to Personal Data collected through our Websites or in connection with our activities.
K. COOKIE MANAGEMENT POLICY
A cookie is a small file that may be placed on the hard drive of your device or on the Website. We collect cookies in order to facilitate access to our services. You are not required to accept cookies, and you may choose which cookies to accept by changing your browser settings so that it does not accept cookies. To change these settings, go to the “Options” or “Preferences” menu of your browser. For more information on the use, management and deletion of cookies for all types of
browsers, we invite you to consult the following link: https://www.cnil.fr/fr/cookies-les-outils-pour-les-maitriser
We collect several types of cookies:
a. First-party cookies:
Cookies set by the website displayed in the browser window; they are identified by the domain name in the address bar of the browser window.
b. Session cookies:
Cookies that expire at the end of the browser session, between the time you open your browser window and the time you leave it.
c. Persistent cookies:
Cookies that are stored on the device at the end of a browsing session and therefore make it possible to remember your preferences or actions when you return to our Website. In accordance with applicable regulations, this data may only be retained for a maximum period of 13 months, excluding Google Analytics.
Below is the list of cookies present on the GenoTher website:
SSR-caching
consent-policy
XSRF-TOKEN
hs
bSession
_cf_bm
fedops.logger.sessionId
cst_cached
ts
svSession
L. UPDATE OF THE PRIVACY POLICY
We may amend this Privacy Policy at any time in order to take into account changes in the law and/or in our personal data protection practices.
Last updated: June 9 th, 2026