Information for Participants

Want to volunteer for research? It's your choice.

Research can improve public health

• Before choosing to become a research volunteer, get the facts.
• Research is a study done to answer a scientific question, not to provide treatment.
• Volunteering for a research study is your choice. You do not have to participate if you do not want to.
• Both researchers and volunteers have responsibilities in a research study. Know what you’re getting into.
• Ask questions so you understand what’s involved.

What is Research?

• Research is done to answer a scientific question, not to provide treatment. Examples include studies designed to test improved treatment for HIV, improved laboratory tests for diseases like hepatitis, and studies designed to learn about ways to increase healthy behaviors like exercise and good parenting.
• The new method may be better than, the same as, or worse than standard treatment.
• Participants in a research study may or may not benefit.
• People in the future may benefit from research as scientists learn more.

Responsibilities of Researchers

• Create a detailed plan for research, called a protocol. Research can’t start until a committee called the Institutional Review Board agrees the protocol answers an important scientific question, is well planned, is as safe as possible, and is ethically sound.
• Check that potential volunteers fit the group of people to be studied.
• Insure that participants understand what’s involved, and voluntarily give their informed consent.
• Insure that any safety issues are addressed promptly.

Responsibilities of Volunteers

• Understand your choices. Understand what the study involves, and what other options are available.
• If the researcher is also your healthcare provider, understand the difference between what is done as part of normal care and what is done for research.
• Ask questions about anything that is unclear to you.
• Know what is expected of you as a participant.
• Keep the researcher informed of any changes you experience while participating in the study.

Questions to ask the researcher

• Why is the study being done? Have there been previous studies? If so, what were the results?
• For medical studies, how is the research different from regular medical care, and how might it impact regular care?
• What are the alternatives to participating in research?
• Does the study involve any costs? Will insurance pay for extra costs during a study?
• How will I be notified if an unanticipated problem happens or if the risks or benefits of the study change?
• How is my privacy being protected?
• What happens if I need to withdraw from the study? What happens if the study is closed by the researcher or drug company? Can I switch from one study to another?

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How to learn more

Deciding whether to participate in research is an important decision. The following websites can help you learn more.

Overviews
Clinical Trials Questions and Answers National Institutes of Health 

An Introduction to Clinical Trials National Institutes of Health

Making an Informed Decision

A Guide to Understanding Informed Consent National Cancer Institute

Talk with your Doctor about Participation in Research Cancer Research and Prevention Foundation

Understanding Risk: What Do Those Headlines Mean? National Institutes of Health

Participant's Guide to Mental Health Research National Institute of Mental Health

Financial Issues
Clinical Trials and Insurance Coverage National Institutes of Health

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Where to find research studies currently enrolling participants

Contact your health department for information about research conducted by your County Health Department

Listing of Clinical Trials
www.clinicaltrials.gov
or 1-888-346-3656

National Cancer Institute
cancer.gov
or 1-800-422-6237

AIDS Info
aidsinfo.nih.gov
or 1-800-874-2572

NIH Clinical Center
clinicalstudies.info.nih.gov
or 1-800-411-1222

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