VOLUNTEERS’ RIGHTS
The rights of volunteers taking part in research
No person may be included in a study without having given his or her consent. Luxemburgish law, based on European directives, is very strict on this subject and protects the rights of participants in research.
Before suggesting that you take part in a study, the Public Research Centre for Health must obtain the agreement of the National Ethics Committee (CNE) for Research, and must either notify, or request authorisation from the National Data protection Commission (CNPD) depending on the type of study.
Before giving your consent, you must have received an information leaflet explaining the aims of the research, as well as the various stages in the study, examinations or treatments you will have to undergo. The doctor suggesting that you take part in the study will also explain this information to you.
This leaflet must include the name of the investigating doctor and of the contact person you can go to for further information.
You can give your consent to take part in the study and decide to discontinue participation at any time during the study without prejudice. You just have to inform either the doctor or any other member of the research team. You are not obliged to give any reasons.
At any time during the study, you can make a complaint relating to your care in the study to the research team by filling out the form provided. We will process your complaint and keep you informed of any follow-up.
During the study, you have the right to access the data collected about you in the course of the study. To do so, you must request it from the investigating doctor or from the project leader responsible for the study within the Public Research Centre for Health.
Your voluntary participation in a study means that you agree to the data about you collected as part of the study being used, duly anonymised, and being kept at the Public Research Centre for Health for a specified length of time as agreed with the National Ethics Committee for Research.
Participation as a volunteer in a research project is free.