Should I Participate?
There are lots of things to consider when making the decision to participate in health research.
For every study, there are risks and benefits, and these should be considered for each study and for each person. Would you participate in research if you were asked to take an experimental drug? What if you were sick and had few other options? What if you were only asked to answer a few questions? What if you were asked to follow a specific diet? What if the health problem to be studied was one that you feel passionate about? What if the problem was one you see impacting the people around you and your loved ones?
Some people decide to participate in research because they are sick and hope to help uncover a new successful treatment. Others participate because they want to help others in their community. Each story is unique.
Watch the "Participating in a Clinical Trial" video to learn more about health research in the U.S. Then, watch the personal stories from participants and researchers.
Source The Center for Information and Study on Clinical Research Participation (CISCRP) – http://www.ciscrp.org/
Listen to an interview excerpt with Dr. John Ruffin, Founding Director of the National Institute on Minority Health and Disparities (NIMHD).
Source NIMHD – http://www.nimhd.nih.gov/
Hear the stories of four individuals who did decide to participate in a research study and why their participation is so critical to a Researcher’s work.
Source NIH – http://www.nih.gov/health/clinicaltrials/stories/index.htm
Participating in a Clinical Trial
Dr. Ruffin Interview Excerpt
Participant Stories
Nicholas
Sickle Cell Disease
Pamela
Multiple Myeloma
Jean
Parkinson's Disease
Warner
Alzheimer's Disease
Researcher Stories
Carl Lejuez
Addictive Behaviors
Charlene Quinn
Diabetes
TOP 5 Reasons African Americans and Latinos Choose to Participate in Research
The Building Trust Research Team asked 2,455 African Americans and Latinos throughout the United States why they would participate in research. Here are the top five reasons they gave:
The national survey was conducted in 2010 by the Building Trust Team with support from the NIH-NIMHD grant 7RC2MD004766.
To help others
To help themselves
They have the disease being studied
A relative or friend has the disease being studied
The researchers were honest about risks
Potential Benefits
While you yourself may not personally benefit from participating in a research study, the knowledge gained through the study will help guide how patients are treated in the future.
The knowledge gained from health and medical research improves future medical treatments and drugs that are available.Information discovered in research studies can also help to understand how to prevent disease and stay healthy, so that less people get sick in the first place.
The knowledge gained from health and medical research studies also improves the delivery of health care services. For example, early research found that a lumpectomy for breast cancer could be as effective for some cancers as a total mastectomy. This changed surgical treatment of breast cancer.
For some critically ill patients, participating in a research study gives them possible access to an experimental drug or treatment when the existing treatments are not working. Although the purpose of the study is not to benefit a specific patient, it is possible that individual patients can benefit while researchers can also learn valuable new information about an experimental drug’s effect on a disease.
Your participation contributes to the scientific knowledge that benefits society. By volunteering to take part in research studies, research participants in the past have contributed to the knowledge of how we currently treat widespread chronic conditions like diabetes, heart disease, and cancer. In addition, many advances have been made treating other conditions, like Parkinson’s disease. Another emerging field of research is examining how our family history of diseases can help us understand the way in which genes may cause disease and how we can better prevent or treat such diseases.
Potential Risks
When you have a conversation as part of informed consent for a study, the researcher will explain the risks of participating to the best of their knowledge. Sometimes, there may be unknown risks, or risks that the researcher cannot predict. This is unlikely when you participate in a study that includes a survey, a group discussion, or an educational program about a health topic. However, it may be possible if you participate in a study of a new drug or procedure. The researcher will give you the best information they know at the time about what the risks are.
When you participate in a research study, you will not know the results in advance. A treatment or plan may or may not be effective.
Finally, it’s important to know that in a randomized clinical trial, some participants receive the new treatment or drug, while others do not receive the new treatment under study. That is called randomization. It is how researchers determine whether the new treatment works - by comparing those who have had the new treatment and those who didn’t. So, participating in this kind of study does not guarantee that you will benefit from the new treatment under study.
While it is possible that you may benefit directly from participating in a research study, the purpose of the study is to increase medical and health knowledge. The purpose is also to benefit the prevention and treatment of health issues for people in the future – just as people in the past who have participated in studies made it possible for us to have the knowledge, treatments, vaccines, and medications we have today.
Additional Resources
Important Question
What more do you need to know to make an informed decision about participating in a research study?
