Taking part is your choice
Nobody can enrol you in a study without your agreement, and agreeing once does not bind you. That principle sits at the centre of every ethical study, and it is backed by law.
Your rights, in short
- To have the study explained in words you understand, before you agree to anything
- To take the consent form home and talk it over with family or your own doctor
- To ask questions at any point, and to get straight answers
- To be told about new information that might change your mind
- To leave the study at any time, for any reason, without losing the care you would otherwise receive
- To have your personal information kept private
- To know who to contact if something goes wrong
Informed consent, step by step
Before you join, a member of the study team will go through a consent form with you. It describes the purpose of the study, every visit and test, the possible risks and benefits, what the other options are, and who to call with questions or concerns.
Take your time with it. You are entitled to take it away, read it at home and come back later. Signing it means you have understood and agree to take part, not that you have given up any rights. If the study changes, you may be asked to read and sign an updated form.
Leaving a study
You can leave whenever you wish. It is wise to tell the study team first, because some treatments need to be stopped gradually and the team may want to check your health one last time. They will also explain what happens to information already collected about you.
If you have a concern
Talk to the study coordinator or the investigator first. The consent form also gives a contact at the ethics committee that approved the study, who is independent of the research team. You can always talk things over with your own doctor as well.