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"When I practice, I want to use evidence-based medicine, but historically, a lot of research has not included African ancestry," she said. "Therefore, I don't actually have evidence that's relevant to the patient that I'm caring for."
Helping Future Generations
There are a variety of reasons why people participate in the All of Us program.
For Carol, who has been with the program from the beginning, passing along information to future generations is a driving factor for her decision to join. “I have children. I have a grandchild and we do see diseases [that] run in our family,” she said. “I always think that if you got your mother’s brown eyes, you probably got everything else. A lot of heart disease [in our family]. We have cancer. We have arthritis. I would like to know if that is genetic or if that is injury related. A couple of us have asthma and I would like to know if that is environmental or inherited and I would like to pass that information down to my grandkids.”
Leesa, 65, is a physical therapist who suffered with an undiagnosed illness for a year and a half before anyone could help. She lost hope and became suicidal. Her experience made her an advocate of this research, “so that the next person does not have to go through what I went through.”
She sees the benefits of a one-million-person strong database. “This is not a guessing game,” said Leesa. “This is not an N of two. This is a large-scale study. This is something that will help us really be able to understand the future of medicine, the future of health care.
“I think that it is critically important because of the precision involved and the numbers. You know it is one thing to have a small study. You can still make good prediction with a small study, but with large studies you can make very precise predictions about what is going to happen. I think about what we have been through in the past year and a half. If we had done something like this 20 or 30 years ago, would we know what we know now and could we have prevented this?”
Libby was born with spina bifida, a birth defect. She was adopted and does not have access to her genetic history. Joining All of Us can offer some genetic information. “As an individual with a disability, I bring a unique perspective that is often left out of research. As an Asian American woman who is a part of multi-minority groups in America, I have a voice that is often unheard or not as strongly heard as others.”
The All of Us Research Program gives participants the opportunity to become a partner in shaping the future of health research.
If you would like to learn more, go to https://allofus.nih.gov.