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Black Americans are under-represented in clinical trials. And that’s a problem for Black Americans.

As a clinical research professional, I see that when recruiters for participants in studies encounter hesitancy from the Black community, they presume Tuskegee is the barrier. In my experience personally and professionally, I can say this is an oversimplification. Let's dig deeper.

Yes, in 1932, the Public Health Service, working with the Tuskegee Institute, began a study of syphilis in hopes of justifying treatment programs for Black people. It was called the “Tuskegee Study of Untreated Syphilis in the Negro Male.” It initially involved 600 Black men — 399 with syphilis, 201 who did not have the disease. The study was conducted without the benefit of the patients’ informed consent. They were misled and never given the appropriate treatment for their disease; when penicillin became a known treatment for syphilis in 1947, researchers did not offer it to the participants. The betrayal and mistrust reverberated for generations.

We must understand and honor that. But that is not the only or, and in some cases, even the primary reason for clinical trial and vaccination trepidation in the Black community today. There’s misinformation and conspiracy theorists like there are in any population. What I can tell you is that in a lot of instances, it comes down to an issue of trust. As an industry, we’re in touch, but we’re not completely in tune. There’s an aforementioned reluctance among clinical trial recruiters to ask more questions. We must dial into how to better understand and dispel these reservations.

For the health and wellbeing of the Black communities across the nation, we cannot sit idly by. Nor can we let this be another instance of people of color feeling like white people are telling them what to do. We need to take ownership of the information here and tell each other what fact is, what is myth, what is beneficial and what will protect us.

Don’t get me wrong. As a Black clinical research expert, I still hear about the doubts and I get a lot of questions from my own community about whether people should participate, even if I am a part of the “pharmaceutical corporate monster.” Even now, as the vaccines are out there changing and saving lives daily, I still hear that it was developed too fast. I tell people that private industry worked with the government to cut red tape, not to cut corners. These vaccine technologies had been tested and in use before COVID-19 emerged and we have done our work with clinical trials in a methodical and highly regulated manner.

But that work is not done.

This is where you come in. Members of the Black community need to hear from one another about believing in science and normalizing participation in both clinical trials and getting vaccinated. If you don’t volunteer, then no one will ever feel safe. I say don’t waste too much energy trying to change the minds of those who are adamantly against vaccines, but some are open to additional knowledge and can be reached. This is why we must keep trying to understand and educate.

Over time, as more people have been vaccinated, the mistrust will dissipate as people see that this is not altering your DNA, not connecting you to 5G cell towers and a third arm has not grown out of your body. Furthermore, we need to tell people in our neighborhoods, in our schools and places of worship, in workplaces and online, that clinical trials have many benefits beyond ensuring that vaccines and other medications are as safe as possible for Black people. These studies are not only compensated, but they also offer complementary healthcare diagnostics under the supervision of physicians. I will never forget a participant whose blood work found indicators of early cancer, enabling them to take care of it in a timely manner.

My call to action for you is to speak up and show up. Make clinical trials and vaccinations a topic of conversation around the table and the community. Share a little of what I’ve passed along here and encourage your loved ones and colleagues to do what they can do to protect one another so we can all get back to our lives as we knew them.

I’m not telling you to get the shot, but I am encouraging you to make a truly informed decision and whatever you choose to do, it’s your prerogative.

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Van Johnson is the vice president of Business Development and Global Alliances at Benchmark Research. A trusted leader in the industry, Benchmark Research has conducted over 1,000 trials to study vaccines with over 40,000 participants with clinics across Texas, Louisiana and California. Learn more at BenchmarkResearch.net and 1-888-902-9605.

Van Johnson

Writing since February 2022 · 1 story contributed