RIGHTS OF PARTICIPANTS
As always in the Elfe study, the data are analyzed in such a way as to guarantee confidentiality and unless you object, they are communicated to researchers of national or international teams in the context of previously authorized research and supervised according to appropriate and adapted guarantees ensuring their confidentiality and provided for, depending on the type of data, a letter of engagement or a sharing agreement between INED and the recipient(s) of the data.
As soon as they have been accepted, you will find the list of research projects on the study website. This list is also included in the newsletter that is sent to you each year.
Throughout the study, you retain a right of control over the information concerning you.
Law No. 78-17 of 6 January 1978 as amended relating to data processing, files and freedoms, applies to the Elfe investigation. It guarantees you a right of access and rectification for the data concerning you.
You have the following rights:
- the right to lodge a complaint with the Commission Nationale de l’Informatique et des Libertés (CNIL);
- the right to request access, rectification or limitation of your data collected in the context of research. You can also access directly or through a doctor of your choice, all of your medical data pursuant to the provisions of Article L. 1111-7 of the Public Health Code;
- the right to object to the collection and transmission of your data covered by medical confidentiality;
- the right to object to secondary reuse of your data and biological samples to conduct research, studies and evaluations in the field of health that are of public interest in the context of the scientific themes carried out by the Elfe study;
- the right to withdraw, at any time, your consent to the collection of your data. Please be aware, however, that useful data collected prior to the exercise of your right to object or the withdrawal of your consent may continue to be treated confidentially so as not to compromise the achievement of the objectives of the research.
- You have 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 further processing at the appropriate time on this same website.
- In addition, you are free to oppose the automatic transmission of Health Insurance data.
Your rights are exercised after a contact with the head of the study, Dr. Marie-Aline Charles
- by registered mail to the following address:
Elfe (UM Ined-Inserm-EFS), 9 Cours des Humanités
CS 50004, 93322 Aubervilliers Cedex. Or
- by email to the email address: firstname.lastname@example.org
In the event of difficulties in exercising your rights, you can also contact the Data Protection Officer appointed by INED (email@example.com) or lodge a complaint with the Commission Nationale de l’Informatique et des Libertés (CNIL).
Participation in the study
Participation in the study is not subject to any commitment: each parent remains entirely free to terminate it whenever he or she wishes, regardless of the reason for his or her decision.
The same is true for children who, as they grow up, may express their disagreement. It should also be noted that, even if the mother agrees to participate, the father may refuse to answer the questionnaires submitted to him, and vice versa, without this hindering the smooth running of the project.