Ethics and data protectionLogo Cohorte EGEA

Ethics and confidentiality

For the phases of the study already completed, in accordance with current regulations, volunteers signed a consent form at the time of inclusion in the study (EGEA1 and EGEA2). The study has received the favorable opinion of the Comité de Protection des Personnes (CPP Sud-Est) and the authorization of the Commission Nationale de l’Informatique et des Libertés (CNIL).
All data collection is carried out with the guarantee of anonymity of your data (they will be coded) and are analyzed globally and not individually.

Data protection

What are participants rights?

Participating in the EGEA cohort means deciding to take part in a major research project that will improve Respiratory health. 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 publication of data allowing the identification of participants is possible. 

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. Just let us know (via: our contact form). 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. This information will be available on the website. 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: (cohorte-egea.fr). You can exercise your rights at any time by contacting the EGEA team electronically via our contact form. 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.

* European regulations on the protection of personal data (RGPD), Data Protection Act, Public Health Code, etc.