I don’t fear the science community, which includes researchers in the social and behavioral sciences plus innovators in medicine. I appreciate their breakthroughs. I respect the painstaking, nose-to-the-grindstone ethos of the scientific method.
As an African American woman, I’m also familiar with headline-making reports about racial disparities in health outcomes in our country and the effects of medical bias and unequal access to health care. Still, that makes me extremely cautious, not anti-.
I occasionally find myself scanning a website of publicly and privately funded clinical trials conducted around the world. The site is provided by the US National Library of Medicine. Some studies offer a ray of hope to those suffering from debilitating diseases who are willing to try experimental methods or drugs. Others offer ways for everyday people like me to contribute to science for the greater good — such as when research leads to wonder drugs or insights that may call for positive changes in medical practices.
Typically, I seek studies that pay me, a volunteer, for consenting to CT scans and EKGs and offering blood and urine samples. I scrutinize project descriptions and consent forms. Everything isn’t for everyone. I’m not a complete daredevil. But I certainly gravitate toward studies in which investigators seek answers to some of the most vexing problems in US health care: racial disparities and the role of factors such as stress, support networks, exercise and sleep habits, access to nutritious food, and what I’ll call navigating American society while Black.
In the United States, Black adults are about twice as likely as white adults to develop type 2 diabetes, according to the National Institutes of Health. And that racial disparity has increased over the past three decades.
Colorectal cancer also disproportionately affects the Black community, which has the highest rates of any racial or ethnic group in the nation. The reasons behind that are complex, the American Cancer Society says, but they reflect differences in risk factors and access to health care.
The National Institute on Minority Health and Health Disparities says it’s “essential” for clinical trials to include people from various backgrounds so “all communities benefit from scientific advances.” Because trials, historically, did not always recruit from groups most affected by particular issues, that “created gaps in our understanding of diseases and conditions, preventive factors, and treatment effectiveness across populations.”
Scholars have taken steps to improve community engagement and study designs.
The 1993 NIH Revitalization Act established guidelines for the inclusion of women and racial and ethnic minorities in clinical research. In 2020, the Food and Drug Administration released guidance on “Enhancing the Diversity of Clinical Trial Populations.”
Still, challenges remain. For example: African Americans make up about 22 percent of annual cases of multiple myeloma cancer. In trials investigating potential new approaches to the disease, the median enrollment percentage of Blacks was 4.5 percent, noted a 2021 article in the journal JCO Oncology Practice.
As much as I hate needles, I feel like I’m part of the solution as a research participant. The interactions are also opportunities for me to ask experts about their work and what keeps them going. Sure, I’m a subject, but silent and passive I’m not.
When I recently arrived for the first part of a clinical study I’m now enrolled in, I took expressionless selfies in a medical gown as I waited for the nurse. I took a few more of my intravenous line. I emailed brief updates to my mother and spouse. (I like to have some of my own documentation, too. Just in case?) On a break after a vein called it quits, bringing blood flow to a halt, I covered my entire body with blankets and began a daily prayer. It was three days before Christmas. The staff was both professional and polite. Of course, I had samples and data they wanted. At the same time, it was great to feel valued in a health care setting. Prized, even.
At home that night and the next day, I sent text messages to several confidants, describing what it was like and why I participate in medical trials from time to time. Most of the studies span many years. I certainly can’t predict the findings, but there’s satisfaction in knowing that my small contribution may somehow, someday, have wellness payoffs for my often-ailing community.
V.M. Vines is an occasional freelance writer based in Bowie, Md. She has written for media outlets about K-12 education and breastfeeding among Black women.