Participant Rights
Table of Contents
- Participant Rights
- Questions to Ask Before Participation
- U.S. Ethical Codes & Regulations
- Withdrawing from a Research Study
The BYU IRB Office is responsible by federal law for ensuring the protection of the rights, welfare, and well-being of participants involved in research studies conducted by BYU faculty, staff and students. If you are a participant, you may contact the IRB with a question or concern.
One way this is accomplished is by having all research studies reviewed by an Institutional Review Board (IRB). The IRB carefully reviews and monitors research to ensure that it is carried out legally and ethically. Research studies cannot be started until the IRB has approved the study.
Every research participant has the following rights:
- To be treated with respect, including respect for your decision whether or not you wish to enroll in, continue in, or stop being in a study.
- To choose to stop being in a study at any time.
- To be given time to read the consent form and have the research study explained to you.
- To be given time to ask questions, and to be told whom you can contact if you have any more questions.
- To be given a copy of the consent form after you have signed it.
- To know the purpose of the research.
- To know how long the study is expected to take.
- To be explained what will go on in the study and which parts of the study are experimental.
- To be disclosed possible risks or discomforts in the study.
- To be explained the possible benefits of the study.
- To be provided the person to contact with questions about the study, your rights, and injuries related to research.
- To be treated in caring and polite way.
- To ask questions about the study at any time; before, during, or after completion of the study.
- To not feel or be pressured in any way while deciding whether to participate.
- To refuse to be in the study, or to change your mind about being in the study once it has begun.
- To refuse to answer any question(s) or survey item(s).
Questions that you should ask before you agree to participate in a research study:
- Why is the research being done?
- What will be done to me as part of the research?
- How will I benefit from the research?
- Could the research hurt me?
- What will the researcher do with my information?
- Will the research cost me anything?
- Who pays if Iām unexpectedly injured in the study?
- How long will the study last?
- What happens if I decide to leave the study early?
- How do I qualify for the study?
- What is the study trying to find out?
- What kinds of test and exams will I have to take while I'm in the study?
- How much time do these take? What is involved in each test?
- How often does the study require me to go to the doctor, laboratory, or clinic?
- What follow-up will there be?
- What will happen at the end of the study?
- What are the risks, possible side effects, or harm that can result from participating?
- How will my information be kept private or shared?
- What to do if you have problems related to participating
- Where to look for information that was learned after the study is over
US Ethical Codes & Regulations:
Withdrawing from a Research Study:
As a research participant, you can leave a research study at any time. When withdrawing from a study, let the research team know that you want to withdraw. The research team may ask why you want to leave the study. It can be helpful to have this information but you do not have to provide a reason if it makes you uncomfortable.
Depending on the type of study, you may receive a variety of instructions for ending participation in the study. For instance, you may get instructions on how to safely stop using study medications. Instructions may also be given on who to contact if you have questions or concerns after leaving the study. Depending on the type of study, the research team may need you to return for a final visit so they can monitor for adverse effects from study treatments, procedures, or interventions.
If the study involves health information, let the research team know if you will allow the continued collection and use of your health information.
Use this sample withdrawal letter if you want to send a letter to the research team to withdraw from the study.
If you have questions about a research study that you are currently in at BYU, please contact us at (801) 422-3606.