Equal Representation for People of Color in Medical Research and Clinical Trials
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Sponsor: The Breast Cancer Site
Minority lives matter, and minority health matters. It's time to be more inclusive in medical research.
People of color often have worse health outcomes than Caucasians, partially because medical research includes very few minorities. Not all diseases and medications affect all populations the same way, but if we don’t study diverse people, we’ll never know about those differences.
One-size-fits-all medicine is still being practiced on a large scale. Nearly 40 percent of people in the United States have some non-European heritage, 1 but minorities are routinely underrepresented in clinical trials even in cases where the disease being studied disproportionately affects them.2 This results in decreased access to potentially life-saving novel treatments and an overall worse standard of care for people of color.2
The 1993 NIH Revitalization Act required federally funded clinical research to prioritize the inclusion of women and minorities, but still very few studies have enough of those populations to be relevant.1 Scientists from these communities—who are the people most likely to be able to be able to reach minority groups—are also less often funded by the NIH.1 Fewer than two percent of clinical cancer trials in the U.S. focus on minorities specifically.3
It may have once been purely racial biases that kept minorities out of medical research, but there is now a wider range of obstacles. Logistical issues, financial burdens, unawareness of clinical trials, and mistrust of scientific experimentation due to past victimization may all affect the willingness of minorities to participate in medical studies.4 However, there are still things that can be done about these problems.
There are several ways we can make participating in medical research easier and more comfortable for minorities. Examples include improving patient awareness of clinical trials, allowing participants to complete parts of studies remotely, employing research recruiters from diverse backgrounds and local communities, and collaborating with patient advocacy organizations.5
Organizations that fund grants, such as the National Science Foundation and the National Institutes of Health, must place more focus on medical research that includes minorities to improve the care and treatment of people of color. They need to uphold stricter diversity requirements to encourage inclusivity, and they need to do a better job of funding minority researchers from the communities they’re trying to reach.
Everyone should benefit from medical research, not just certain groups. It’s time to tell these organizations that minority health matters and demand that they make strides toward including more people of color in medical research.
- “Diversity in Medical Research Is a Long Way Off, Study Shows,” University of California San Francisco (UCSF); December 15, 2015.
- “The Importance of Diversity in Clinical Trials (Because Right Now, It's Lacking),” BioSpace; October 10, 2018.
- “Why Minority Representation in Medical Research Is a Matter of Life and Death,” Public Broadcasting Service (PBS); October 30, 2019.
- “Increasing Diversity in Clinical Trials: Overcoming Critical Barriers,” ScienceDirect; May 2019.
- “Diversity Is Severely Lacking Among Clinical Trial Participants -- How Can We Solve This Problem?” Forbes.com; October 15, 2019.
The Petition:
To the National Science Foundation, the National Institutes of Health, and all medical research funders,
Excluding people of color from medical research has gone on long enough. While we acknowledge that it may be difficult to provide the accommodations needed to convince minority groups to participate in clinical trials and studies, this is an important goal to work toward, and there are tangible things that can be done to achieve it.
In the long run, including racial minority groups in medical research will benefit all of us. We’ll have an improved understanding of the human body in all its diversity, and we’ll be able to develop drugs and treatments that are safer and better for everyone taking them.5
Knowing more about how different treatments affect different populations will also help us use our resources more effectively and lower the annual medical care cost in this country, which is currently about $1.2 trillion dollars higher than it needs to be because of racial and ethnic disparities.1 Taking the time to find minority participants may be difficult and expensive, but it’s nothing compared to this.
Minority lives matter, and minority health matters. It’s time to be more inclusive in medical research in order to improve our medical knowledge and the care and treatment people of color receive.
We demand that you raise your standards of diversity and inclusion for the research you fund and that you give more attention to minority scientists who can help bring in minority participants to their studies.
Sincerely,
