Protection of your personal data

The Institut Jérôme Lejeune commits to the applicable legislation on the protection of personal data, including the 2016/679 European Regulation, known as the General Data Protection Regulation (GDPR), as well as the national provisions of Law no. 78-17 of 6 January 1978 related to database, files and privacy, amended by the Law no. 2018-493 of 20 June 2018 related to the protection of personal data.

Please find below all the information which is necessary to understand why and how we use the personal data you give us in the context of the framework of this website, so that you may exercise your rights in terms of protection of these data.

The data controller of the data collected by this website is the Institut Jérôme Lejeune, located at 37, rue des Volontaires, 75725 Paris Cedex 15.

The Institut Jérôme Lejeune is a care and clinical research centre with a European dimension, acting for people with genetic intellectual deficiencies, including Trisomy 21. The three lines of our mission are care, research, and training courses for families and handicap professionals who accompany the patients.

Services offered on this website aim at:

  • informing the public about the Biological Resources Centre of the Jerome Lejeune Institute,
  • making the catalogue of the BRC-BioJeL’s biological resources available for researchers and allowing them to apply for an online availability
  • allowing people who are concerned or affected by our action to contact us.

Data that are collected during your interactions with those services are used as follows:

  • To get in contact with you in order to provide you with the information you wish to receive from us,
  • If you are a researcher, to enable you to ask for biological samples.

We implement secured lines of communication and store your personal data in a protected environment.

Your personal data are not transferred outside the European Union or to international organisations. In case we would have to operate such transfers in the future, we commit to implement a system that guarantees a level of protection for your personal data which is equivalent to what you profit within the European Union.

When you fill in the contact request form, you are informed of the data that are required to process your request (marked with an *).

As a researcher, when you fill in the request form for the provision of biological resources, the personal data you provide us with are your surname, first name, function/qualification, service, professional phone and email. We need these information to process your request, in addition to the information about the research project.

The recipients of your data are:

  • The administrative staff of the Institut Jérôme Lejeune,
  • The personnel of the third parties who process them on our behalf, according to our instructions, and within the framework of a contractual agreement that complies with the requirements of the applicable regulations, in particular the GDPR.
  • Members of the Scientific Committee (recipients of researchers’ data)

We keep the data you send to us via the request forms on the website to stay in touch with you, unless you decide to unsubscribe from our communications by electronic means, or if you decide to exercise your right to oppose or delete information about you.

Exercise of your rights:

You may at any time exercise your right to access, rectify or delete your data, object to their processing or request their limitation.

For any request concerning your personal data, you can contact us at the following address: dpo@institutlejeune.org.

In the case you believe that we are not respecting your rights, you also have the right to complain to the supervisory authority of the country where you live (if you are located in the European Union), or of the Commission Nationale de l’Informatique et des Libertés (CNIL) (if you are located in France or outside the European Union) by writing to 3 place Fontenoy – TSA 80715 – 75334 Paris cedex 07, or by calling +33 (0)1 53 73 22 22 or, electronically, on the Commission’s website : www.cnil.fr