Participant Rights & Responsibilities

What are my rights as a participant?

As a research participant you have a right to:

  • Be treated with respect
  • Ask questions and have them answered to your satisfaction, before and during your participation in the study
  • Receive information about research in general or about a specific study
  • Take time to decide whether or not to participate in a study, or continue in a study
  • Make your own decision about your care and treatment
  • Refuse any test, medication or procedure
  • Quit the study at any time
  • Know your information is secure and kept confidential
  • Know what the limits of protection are for you as a research participant
  • Know when absolute confidentiality cannot be maintained and how that will be handled
  • Consult with a Research Participant Advocate who serves as a liaison between you and the research team

What are my responsibilities as a participant?

As a research participant you have the following responsibilities:

  • Make an informed decision about joining or continuing in a research study
  • Discuss participation in research with those you trust, including family members or a health care provider
  • If your health care provider is also the researcher, it is important to know what is discussed and done as standard or routine medical care and what occurs for research purposes
  • Ask questions about anything that is unclear to you
  • Learn as much as possible about the research
  • Know what is expected of you as a participant
  • Keep research appointments or re-schedule as soon as you know you can’t keep the appointment
  • Follow instructions as given by the researcher or other member of the research team
  • Keep your researcher informed of any changes you experience while participating in the study