What are participants' rights?

Participating in the EDEN cohort means deciding to take part in a major research project that will improve scientific knowledge on crucial health issues for the future. The health data that you agree to transmit within the framework of this project are personal data, which is why they are treated in a totally confidential manner and for research purposes only. As such, they are subject to special protection under the law* in order to guarantee respect for your private life.

All necessary measures are taken to guarantee security and to prevent access by unauthorised third parties. No transmission or publication of data allowing the identification of participants is possible without the prior authorisation of the persons concerned and of the Commission nationale de l'informatique et des libertés (Cnil).

Participants have the right to access and rectify your data, as well as the right to delete, oppose or limit the processing and transmission of your data. If you no longer wish to participate in this study, we will not collect any further data about you. However, the data already collected cannot be completely erased: in order to allow the public interest missions of the study and its completeness, part of them will be kept separately, under conditions that guarantee their minimisation and confidentiality.

Some of the information and biological samples concerning you may be transferred to other organisations or institutions, public or private, in France or abroad, in the context of other research. If you accept the principle, your data may be communicated to these teams in accordance with appropriate and adapted guarantees to ensure their confidentiality. These guarantees will be set out in a contract or a sharing agreement between Inserm and the recipients of the data. Partipants have of course the right to obtain a copy of the documents related to the transfer of your data and will be informed of the purpose of any new processing at the appropriate time on the study website: http://eden.vjf.inserm.fr

You can exercise your rights at any time by contacting the EDEN team electronically at etude.inserm@inserm.fr. In case of difficulties, you can also contact the Data Protection Officer (DPO) appointed by Inserm, by e-mail (dpo@inserm.fr) or by post (Déléguée à la Protection des Données, 101 rue de Tolbiac, 75013 Paris).

You also have the right to lodge a complaint with the Cnil, the national authority in charge of controlling personal data.

Find all ongoing projects and publications from the EDEN cohort by clicking on the following links: