Research Center

Research Volunteers: Medical Heroes

What words come to mind when you hear the word research? Some people think "guinea pig". Why? Because of abuses of research volunteers in some past studies. One of the most talked about is the Tuskegee syphilis trial. As a result of the poor and unethical treatment of research volunteers, the Belmont Report was formed to ensure the safety of research volunteers. The Belmont Report states that all people taking part must be treated with respect, justice and beneficence. These three words are the guide of how research is carried out today.

Research Leads to Better Health

We take many things about our health for granted:

Quick pain relief from a pill
Living a normal life with cancer, diabetes, heart disease or AIDS

All of these things were made possible by medical breakthroughs.

We are living longer, healthier and happier lives because people volunteer for and take part in research studies. That's why research volunteers are medical heroes! Because behind every medical breakthrough and new treatment are thousands of people who take part in research studies.

Thank You for Taking Part

If you or someone you know have ever taken part in a research study, THANK YOU! Around the world, people benefit because individuals they have never met volunteer every year to take part in medical research.

If You're Thinking about Taking Part

If you are thinking about joining a research study, and have questions about what it means to be a research volunteer, this online research center may help you decide to take part. Research volunteers and their safety are the most important part of the research study. There are many ways you are kept safe during a research study.

Safety first - There are research safety rules and regulations at the national and local levels, as well as at the institutions where research is being done. Researchers must know and follow the rules. But you should also know the rules and make sure they're being followed.

Know your rights - During the informed consent process, you will learn about the study, why it is being done, how long it will last, what you are being asked to do, any risks or benefits, any costs to you and what will happen if you become injured as a result of taking part in the study. The bottom line is you decide if you want to take part or not. If you decide to take part, you will sign the informed consent document, which is like a bill of rights. It is important to know your taking part is voluntary and you can decide to not take part at any time with no penalty to yourself.

Volunteering is not a permanent job, and you have a right to be treated safely and fairly. If you no longer feel safe or confident as a volunteer, you can withdraw at any time. And if the study staff or a regulatory group decides that you are no longer protected enough from potential harm or bias, they can end the study.

Know yourself - Not every trial is right for every person. If you don't meet eligibility criteria or can't do your part, you might put your health or the study at risk.

Know the study - Learn what you can and can't do during the trial, learn about the research plan and what procedures you will have to go through, and be aware of the risks and benefits associated with volunteering for the study.

Learn more - Your first source of information about any personal health concerns should be your primary doctor, but you can also get information from top medical journals. These are usually written for scientists and healthcare professionals, so to get information that is easier to understand, try attending medical conferences, information days at your local hospital and look for internet sites that publish summaries of medical information. Your local research center will also be an invaluable resource for you.

Advocacy groups for different diseases and conditions are good resources for people interested in learning more about disease. These groups often provide easy-to-understand information and updates in scientific advances for a particular disease.

The NetWellness section Finding Research Studies provides information that will help you connect to the studies that are right for you.

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This article is a NetWellness exclusive.

Last Reviewed: May 11, 2011

Mary Ellen Lawless, MA, RN
Research Nurse
School of Medicine
Case Western Reserve University

Ashwini Sehgal, MD
Professor of Medicine
School of Medicine
Case Western Reserve University

Janeen León, MS, RD, LD
Instructor of Medicine
School of Medicine
Case Western Reserve University