Your rights as a research participant
Both patients and healthy volunteers may be approached to participate in a research study. Participation in research studies will always be voluntary. Even when you agree to be part of a research study, you should be able to withdraw at any point from the study while the study is running.
You may not directly benefit from being involved in a study, but your involvement may lead to new knowledge in a particular area of research, such as prevent a disease or benefit those with a particular disease.
If you are approached to be involved in a study, you will likely be provided with a Participant Information Leaflet. The Participant Information Leaflet should provide you with information on the essential elements of the specific study:
- what the research is about,
- the condition or treatment under study,
- the voluntary nature of involvement, what will happen during and after the research has taken place,
- what treatment (if applicable) will be withheld,
- the participants responsibilities, the potential risks, inconvenience or restrictions balanced against any possible benefits and the alternatives,
- how to withdraw from a study,
- how your data might be used.
If you are considering participating in a research study, it is important that you carefully read the Participant Information Leaflet before deciding whether to participate or not.
Ethics Committees play a key role in protecting the interests of research participants. Although Research Ethics Committees value new knowledge and scientific progress obtained from research, the safety and well-being of participants takes precedence in the review process.
The REC will pay close attention to whether the participant is being adequately informed about the research study before participating.