Your Rights and Data Protection:
Participating in the EDEN cohort means deciding to take part in a major research project that improves scientific knowledge about critical health issues for the future.
French and international scientific teams wishing to use EDEN data for their own research can propose projects. The interested teams are mainly from public organizations. All projects must have a public health objective, and those that may have a marketing objective are excluded.
Your Rights:
In accordance with the Data Protection Act and the General Data Protection Regulation (GDPR) concerning the protection of individuals regarding the processing of personal data and the free movement of such data, you have rights regarding the processing carried out within the scope of EDEN, namely:
· To be informed about the processing of data concerning you and to remain informed.
When you were included in the EDEN study, several documents were provided to you, which you can find in the scientific space: Information Leaflets - Consents.
You can access all information concerning the use of data concerning you through:
The list of ongoing and upcoming projects (Ongoing Projects). This list is regularly updated. By clicking on the title of a project, you will access information about the scientific leader, the research conducted, and the nature of the information used.
The list of publications is available in the scientific space: Scientific Outputs. This list is regularly updated.
This information is also available through the newsletter that you receive.
· To object to the reuse of data concerning you or to request limitation.
To use EDEN data, projects submitted by researchers must be accepted by the EDEN Monitoring Committee, which validates their scientific content. In addition, the legal and regulatory procedures related to the project must be finalized. You can object to your data being used in the context of any of these projects without having to provide justification. Your decision regarding the reuse of your data in ancillary projects to EDEN does not interfere with your participation in EDEN.
You also have the right to access and rectify data concerning you, as well as the right to erase, object, or limit processing and the transmission of your data.
If you no longer wish to participate in EDEN, we will not collect any new data concerning you. However, data already collected cannot be completely erased: to allow the study's public interest missions and completeness, some of them will be kept separately under conditions ensuring their minimization and confidentiality.
How to Exercise Your Rights?
You can exercise your rights at any time by contacting the EDEN team electronically at the following address: etude.inserm@inserm.fr
In case of difficulties, you can also contact the Data Protection Officer (DPO) designated by Inserm by email (dpo@inserm.fr) or by postal mail (Data Protection Officer, 101 rue de Tolbiac, 75013 Paris).
You also have the right to lodge a complaint with the CNIL, the national authority responsible for the control of personal data.
Find all ongoing projects and publications from the EDEN cohort by clicking on the following links:
