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Recently, a group of scientists took a look at the state of diversity in clinical trials, and according to the results they published in PLOS One, the news was not good. The study, headed by Sam Oh and discussed in a paper titled “Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled,” found that the vast majority of medical research uses a homogenous population of white males to research various drugs, diseases, and other medical issues.
These results are certainly troubling for people who suffer from various medical conditions at large. However, they are even more troubling for victims of relatively rare diseases such as mesothelioma, given that the potential pool of participants in research is so small to begin with.
History of Diversity in Medical Research
We have long known that a person’s genetic makeup determines what diseases and medical conditions they may be susceptible to. It also determines the types of treatments that may be effective for an individual.
In recognition of this fact, the National Institutes of Health (NIH) Revitalization Act was passed in 1993 and signed into law by then-President Clinton. Among other things, the act required studies funded with federal dollars to include women and minorities, and to provide a description in papers published as a result of those studies.
Since the implementation of that act, the NIH has made specific efforts to improve gender equity in medical studies. However, while there has been some advancement for women, there is still a long way to go with respect to studying medical problems according to race and ethnicity.
Dr. Oh and his team have shown that since the NIH Revitalization Act became law, studies have drastically under-studied minorities. According to the paper, over the last 23 years “less than 2% of more than 10,000 cancer clinical trials funded by the National Cancer Institute included enough minority participants to meet the NIH’s own criteria and goals” and less than 5% is true for studies of respiratory issues.
Given that minorities make up nearly 40% of the population, this lack of diversity in medical studies is implicated not just in medical problems, but also in economic disparity. During the period between 2003 – 2006, an estimated $1.2 trillion in medical costs could have been saved simply by having more diversity in medical studies.
Why We Need Diversity in Mesothelioma Studies
Mesothelioma is sometimes called an “old man’s disease,” but as we know all too well, anyone can be subjected to asbestos exposure– whether it’s in your home, at your workplace, or simply happened to be on the jacket your dad wore every day, as was the case with Heather Von St. James.
This deadly cancer does not discriminate, nor should we limit our attempts to find a cure for mesothelioma to a single subset of its victims.
Furthermore, as mesothelioma (and cancer in general) continues to become a greater problem in developing countries, there is an even greater need to take a multiethnic approach to combatting this worldwide, indiscriminate disease. Given the diversity of the population and the amount of money spent already on medical research, researchers in the U.S. and other economically stable countries stand uniquely poised to make a lasting impact on how mesothelioma, other cancers, and deadly diseases in general are studied.
How to Make Studies More Inclusive
The good news is that we don’t need to fight any legislative battles or pass any new laws to make this happen. Those fights were fought – and won – more than two decades ago.
All we need now is to:
- Increase awareness of the problem and the benefits of changing current practice with respect to medical research;
- Convince the people who organize and run such studies that inclusivity helps everyone.
Anyone can help, whether you’re a participant in a clinical trial, a friend or family member, a doctor or researcher. Even just talking to people about the problem and making it part of the social conversation will help change attitudes and, hopefully, practices.
Oh, Sam S., et al. (Dec. 15, 2015). "Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled.” PLOS One. DOI: 10.1371/journal.pmed.1001918
Shapiro, Ari. (Dec. 15, 2015). “Lack of Diversity in Clinical Trials Presents Possible Health Consequences.” NPR.
Resources for Mesothelioma Patients and Their Families
- Request a Free Mesothelioma Treatment Guide
- Connect with Top Mesothelioma Doctors
- Locate the Nearest Comprehensive Cancer Center