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Vivian W. Pinn, M.D., Former Director, The Office of Research on Women’s Health, National Institutes of Health: We all want to be healthy. We all want to know how we can protect our health and we want our physicians and our health care providers to know how to answer those questions we have about our health. How to prevent diseases. How to cure diseases. But do you know how we get that information?
Narrator: Vaccines, pain relievers, treatments for diabetes, heart disease and cancer are all proven medical advances that are available today because of clinical trials. But in order for research to be accurate, it is important to develop treatments based on populations that are similar to the patient being treated.
Dr. Pinn: The way that we can help make that occur is to participate in the studies so that the results of that research can benefit all segments of our population.
Narrator: And while, in the past, science has not always been fair to African Americans, important safeguards have been put in place to ensure that history does not repeat itself.
Barbara Porter, Former Member, Institutional Review Board: The institutional review board is what the IRB stands for is a federally mandated review process to ensure that humans who are involved in research are protected and safe. As African Americans, we were victimized and my eyes are wide open about this. I’ve seen that evolution and the IRB process that I was involved in for many years here at mayo. It really was the outgrowth in response to the atrocities that took place many years ago. You will be protected. Nothing is going to happen that you don’t want to happen in terms of your participation. IRB mandates that protections be in place and that individuals always have the opt-out potential if they feel that, you know, the risks are outweighing their reward.
Ginger, medical research participant: In my experience, they’re extremely safe and there’s nothing to worry about. They take so much care in making sure that the patient comes first and the patient’s health comes first.
Narrator: For many, clinical trials offer advanced access to cutting edge medical care.
Ginger: I was diagnosed with a rare condition and because my options were very limited, that’s what peaked my interest initially.
Ms. Porter: Some of the best therapies for treatment of cancer are only available through clinical trials.
Narrator: But even for those who are fighting serious illness, a larger picture emerges.
Ginger: Yes, you’re helping yourself but you’re also going to be helping others in the general population.
Loni, medical research participant: I offered to participate in a clinical trial because I care about the rest of humanity and I have kids and I want them to have access to newer research, newer treatment options, better medical care, as they grow up.
Narrator: And while many research studies examine specific diseases, trials are also in need of participants with no specific health concerns.
Loni: I’ve been in a lot of different clinical trials where I served as the normal patient. I’ve also participated in clinical trials just as a part of my regular physical exams so I’ve signed forms that allow people to look at my bone mineral density studies, my mammogram, and blood work results. Things like that.
Dr. Pinn: It is important that people like you and me participate in those studies so that when the results from those studies come forth, people like you and me can also benefit from the results of research.
Ginger: I would strongly encourage people to participate. I mean medicine is where it is today based on research in the past.
Loni: All of us are different. We all heal differently. We grow differently. We develop different diseases and there’s so much that can be done to look at how our lives, our environments, our habits, influence disease so that we can make headway into eradicating diseases that affect certain populations.
Ms. Porter: I think it’s so important for us as African Americans to be involved in clinical trials. For us to not have access as African Americans because we’re not at the table participating, that’s a lack of what I would consider justice.
Narrator: Every one of the four women you met today has chosen to participate in clinical research studies. Their participation will make a difference in the quality of health care for African Americans and women–today, tomorrow and beyond. Now the choice is yours.
Dr. Pinn: Will you decide that you too will be a participant in a clinical research study? I hope so. You too can make a difference.
Narrator: If you would like to learn about participating in a clinical trial, go to the National Library of Medicine clinical trials website or researchmatch.org. You can also find information by visiting the Mayo Clinic website or websites of other medical foundations. And talk to your physician. Your doctor can help determine if you qualify for a research study, as well as explain the potential risks and benefits.
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