Black Participants Are Sorely Absent from Medical Research
After years of suffering from mysterious symptoms, my mother Janice Thomas finally found a doctor who correctly diagnosed her with two autoimmune diseases, Lupus and Sjogren's. Both diseases are more prevalent in the black population than in other races and are often misdiagnosed.
The National Institutes of Health has found that minorities make up less than 10 percent of trial participants.
Like many chronic health conditions, a lack of understanding persists about their causes, individual manifestations, and best treatment strategies.
On the search for relief from chronic pain, my mother started researching options and decided to participate in clinical trials as a way to gain much-needed insights. In return, she received discounted medical testing and has played an active role in finding answers for all.
"When my doctor told me I could get financial or medical benefits from participating in clinical trials for the same test I was already doing, I figured it would be an easy way to get some answers at little to no cost," she says.
As a person of color, her presence in clinical studies is rare. The National Institutes of Health has found that minorities make up less than 10 percent of trial participants.
Without trial participation that is reflective of the general population, pharmaceutical companies and medical professionals are left guessing how various drugs work across racial lines. For example, albuterol, a widely used asthma treatment, was found to have decreased effectiveness for black American and Puerto Rican children. Many high mortality conditions, like cancer, also show different outcomes based on race.
Over the last decade, the pervasive lack of representation has left communities of color demanding higher levels of involvement in the research process. However, no consensus yet exists on how best to achieve this.
But experts suggest that before we can improve black participation in medical studies, key misconceptions must be addressed, such as the false assumption that such patients are unwilling to participate because they distrust scientists.
Jill A. Fisher, a professor in the Center for Bioethics at the University of North Carolina at Chapel Hill, learned in one study that mistrust wasn't the main barrier for black Americans. "There is a lot of evidence that researchers' recruitment of black Americans is generally poorly done, with many black patients simply not asked," Fisher says. "Moreover, the underrepresentation of black Americans is primarily true for efficacy trials - those testing whether an investigational drug might therapeutically benefit patients with specific illnesses."
Without increased minority participation, research will not accurately reflect the diversity of the general population.
Dr. Joyce Balls-Berry, a psychiatric epidemiologist and health educator, agrees that black Americans are often overlooked in the process. One study she conducted found that "enrollment of minorities in clinical trials meant using a variety of culturally appropriate strategies to engage participants," she explained.
To overcome this hurdle, The National Black Church Initiative (NBCI), a faith-based organization made up of 34,000 churches and over 15.7 million African Americans, last year urged the Food and Drug Administration to mandate diversity in all clinical trials before approving a drug or device. However, the FDA declined to implement the mandate, declaring that they don't have the authority to regulate diversity in clinical trials.
"African Americans have not been successfully incorporated into the advancement of medicine and research technologies as legitimate and natural born citizens of this country," admonishes NBCI's president Rev. Anthony Evans.
His words conjure a reminder of the medical system's insidious history for people of color. The most infamous incident is the Tuskegee syphilis scandal, in which white government doctors perpetrated harmful experiments on hundreds of unsuspecting black men for forty years, until the research was shut down in the early 1970s.
Today, in the second decade of twenty-first century, the pernicious narrative that blacks are outsiders in science and medicine must be challenged, says Dr. Danielle N. Lee, assistant professor of biological sciences at Southern Illinois University. And having majority white participants in clinical trials only furthers the notion that "whiteness" is the default.
According to Lee, black individuals often see themselves disconnected from scientific and medical processes. "One of the critiques with science and medical research is that communities of color, and black communities in particular, regard ourselves as outsiders of science," Lee says. "We are othered."
Without increased minority participation, research will not accurately reflect the diversity of the general population.
"We are all human, but we are different, and yes, even different populations of people require modified medical responses," she points out.
Another obstacle is that many trials have health requirements that exclude black Americans, like not wanting individuals who have high blood pressure or a history of stroke. Considering that this group faces health disparities at a higher rate than whites, this eliminates eligibility for millions of potential participants.
One way to increase the diversity in sample participation without an FDA mandate is to include more black Americans in both volunteer and clinical roles during the research process to increase accountability in treatment, education, and advocacy.
"When more of us participate in clinical trials, we help build out the basic data sets that account for health disparities from the start, not after the fact," Lee says. She also suggests that researchers involve black patient representatives throughout the clinical trial process, from the study design to the interpretation of results.
"This allows for the black community to give insight on how to increase trial enrollment and help reduce stigma," she explains.
Thankfully, partnerships are popping up like the one between The Howard University's Cancer Center and Driver, a platform that connects cancer patients to treatment and trials. These sorts of targeted and culturally tailored efforts allow black patients to receive assistance from well-respected organizations.
Some observers suggest that the federal government and pharmaceutical industries must step up to address the gap.
However, some experts say that the black community should not be held solely responsible for solving a problem it did not cause. Instead, some observers suggest that the federal government and pharmaceutical industries must step up to address the gap.
According to Balls-Berry, socioeconomic barriers like transportation, time off work, and childcare related to trial participation must be removed. "These are real-world issues and yet many times researchers have not included these things in their budgets."
When asked to comment, a spokesperson for BIO, the world's largest biotech trade association, emailed the following statement:
"BIO believes that that our members' products and services should address the needs of a diverse population, and enhancing participation in clinical trials by a diverse patient population is a priority for BIO and our member companies. By investing in patient education to improve awareness of clinical trial opportunities, we can reduce disparities in clinical research to better reflect the country's changing demographics."
For my mother, the patient suffering from autoimmune disease, the need for broad participation in medical research is clear. "Without clinical trials, we would have less diagnosis and solutions to diseases," she says. "I think it's an underutilized resource."
Friday Five: The Therapeutic Value of Bonding with Fellow Sports Fans
The Friday Five covers five stories in research that you may have missed this week. There are plenty of controversies and troubling ethical issues in science – and we get into many of them in our online magazine – but this news roundup focuses on new scientific theories and progress to give you a therapeutic dose of inspiration headed into the weekend.
This episode includes an interview with Dr. Helen Keyes, Head of the School of Psychology and Sports Science at Anglia Ruskin University.
Listen on Apple | Listen on Spotify | Listen on Stitcher | Listen on Amazon | Listen on Google
- Attending sports events is linked to greater life satisfaction
- Identifying specific brain tumors in under 90 seconds with AI
- LSD - minus hallucinations - raises hopes for mental health
- New research on the benefits of cold showers
- Inspire awe in your kids and reap the benefits
Matt Fuchs is the editor-in-chief of Leaps.org and Making Sense of Science. He is also a contributing reporter to the Washington Post and has written for the New York Times, Time Magazine, WIRED and the Washington Post Magazine, among other outlets. Follow him @fuchswriter.
The rise of remote work is a win-win for people with disabilities and employers
Disability advocates see remote work as a silver lining of the pandemic, a win-win for adults with disabilities and the business world alike.
Any corporate leader would jump at the opportunity to increase their talent pool of potential employees by 15 percent, with all these new hires belonging to an underrepresented minority. That’s especially true given tight labor markets and CEO desires to increase headcount. Yet, too few leaders realize that people with disabilities are the largest minority group in this country, numbering 50 million.
Some executives may dread the extra investments in accommodating people’s disabilities. Yet, providing full-time remote work could suffice, according to a new study by the Economic Innovation Group think tank. The authors found that the employment rate for people with disabilities did not simply reach the pre-pandemic level by mid-2022, but far surpassed it, to the highest rate in over a decade. “Remote work and a strong labor market are helping [individuals with disabilities] find work,” said Adam Ozemik, who led the research and is chief economist at the Economic Innovation Group.
Disability advocates see this development as a silver lining of the pandemic, a win-win for adults with disabilities and the business world alike. For decades before the pandemic, employers had refused requests from workers with disabilities to work remotely, according to Thomas Foley, executive director of the National Disability Institute. During the pandemic, "we all realized that...many of us could work remotely,” Foley says. “[T]hat was disproportionately positive for people with disabilities."
Charles-Edouard Catherine, director of corporate and government relations for the National Organization on Disability, said that remote-work options had been advocated for many years to accommodate disabilities. “It’s a little frustrating that for decades corporate America was saying it’s too complicated, we’ll lose productivity, and now suddenly it’s like, sure, let’s do it.”
The pandemic opened doors for people with disabilities
Early in the pandemic, employment rates dropped for everyone, including people with disabilities, according to Ozemik’s research. However, these rates recovered quickly. In the second quarter of 2022, people with disabilities aged 25 to 54, the prime working age, are 3.5 percent more likely to be employed, compared to before the pandemic.
What about people without disabilites? They are still 1.1 percent less likely to be employed.
These numbers suggest that remote work has enabled a substantial number of people with disabilities to find and retain employment.
“We have a last-in, first-out labor market, and [people with disabilities] are often among the last in and the first out,” Olzemik says. However, this dynamic has changed, with adults with disabilities seeing employment rates recover much faster. Now, the question is whether the new trend will endure, Olzemik adds. “And my conclusion is that not only is it a permanent thing, but it’s going to improve.”
Gene Boes, president and chief executive of the Northwest Center, a Seattle organization that helps people with disabilities become more independent, confirms this finding. “The new world we live in has opened the door a little bit more…because there’s just more demand for labor.”
Long COVID disabilities put a premium on remote work
Remote work can help mitigate the impact of long COVID. The U.S. Centers for Disease Control and Prevention reports that about 19 percent of those who had COVID developed long COVID. Recent Census Bureau data indicates that 16 million working age Americans suffer from it, with economic costs estimated at $3.7 trillion.
Certainly, many of these so-called long-haulers experience relatively mild symptoms - such as loss of smell - which, while troublesome, are not disabling. But other symptoms are serious enough to be disabilities.
According to a recent study from the Federal Reserve Bank of Minneapolis, about a quarter of those with long COVID changed their employment status or working hours. That means long COVID was serious enough to interfere with work for 4 million people. For many, the issue was serious enough to qualify them as disabled.
Indeed, the Federal Reserve Bank of New York found in a just-released study that the number of individuals with disabilities in the U.S. grew by 1.7 million. That growth stemmed mainly from long COVID conditions such as fatigue and brain fog, meaning difficulties with concentration or memory, with 1.3 million people reporting an increase in brain fog since mid-2020.
Many had to drop out of the labor force due to long COVID. Yet, about 900,000 people who are newly disabled have managed to continue working. Without remote work, they might have lost these jobs.
For example, a software engineer at one of my client companies has struggled with brain fog related to long COVID. With remote work, this employee can work during the hours when she feels most mentally alert and focused, even if that means short bursts of productivity throughout the day. With flexible scheduling, she can take rests, meditate, or engage in activities that help her regain focus and energy. Without the need to commute to the office, she can save energy and time and reduce stress, which is crucial when dealing with brain fog.
In fact, the author of the Federal Reserve Bank of New York study notes that long COVID can be considered a disability under the Americans with Disability Act, depending on the specifics of the condition. That means the law can require private employers with fifteen or more staff, as well as government agencies, to make reasonable accommodations for those with long COVID. Richard Deitz, the author of this study, writes in the paper that “telework and flexible scheduling are two accommodations that can be particularly beneficial for workers dealing with fatigue and brain fog.”
The current drive to return to the office, led by many C-suite executives, may need to be reconsidered in light of legal and HR considerations. Arlene S. Kanter, director of the disability law and policy program at the Syracuse University College of Law, said that the question should depend on whether people with disabilities can perform their work well at home, as they did during Covid outbreaks. “[T]hen people with disabilities, as a matter of accommodation, shouldn’t be denied that right,” Kanter said.
But companies shouldn’t need to worry about legal regulations. It simply makes dollars and sense to expand their talent pool by 15% of an underrepresented minority. After all, extensive research shows that improving diversity boosts both decision-making and financial performance.
Companies that are offering more flexible work options have already gained significant benefits in terms of diverse hires. In its efforts to adapt to the post-pandemic environment, Meta, the owner of Facebook and Instagram, decided to offer permanent fully remote work options to its entire workforce. And according to Meta chief diversity officer Maxine Williams, the candidates who accepted job offers for remote positions were “substantially more likely” to come from diverse communities: people with disabilities, Black, Hispanic, Alaskan Native, Native American, veterans, and women. The numbers bear out these claims: people with disabilities increased from 4.7 to 6.2 percent of Meta’s employees.
Having consulted for 21 companies to help them transition to hybrid work arrangements, I can confirm that Meta’s numbers aren’t a fluke. The more my clients proved willing to offer remote work, the more staff with disabilities they recruited - and retained. That includes employees with mobility challenges. But it also includes employees with less visible disabilities, such as people with long COVID and immunocompromised people who feel reluctant to put themselves at risk of getting COVID by coming into the office.
Unfortunately, many leaders fail to see the benefits of remote work for underrepresented groups, such as those with disabilities. Some even say the opposite is true, with JP Morgan CEO Jamie Dimon claiming that returning to the office will aid diversity.
What explains this poor executive decision making? Part of the answer comes from a mental blindspot called the in-group bias. Our minds tend to favor and pay attention to the concerns of those in the group of people who seem to look and think like us. Dimon and other executives without disabilities don’t perceive people with disabilities to be part of their in-group. They thus are blind to the concerns of those with disabilities, which leads to misperceptions such as Dimon’s that returning to the office will aid diversity.
In-group bias is one of many dangerous judgment errors known as cognitive biases. They impact decision making in all life areas, ranging from the future of work to relationships.
Another relevant cognitive bias is the empathy gap. This term refers to our difficulty empathizing with those outside of our in-group. The lack of empathy combines with the blindness from the in-group bias, causing executives to ignore the feelings of employees with disabilities and prospective hires.
Omission bias also plays a role. This dangerous judgment error causes us to perceive failure to act as less problematic than acting. Consequently, executives perceive a failure to support the needs of those with disabilities as a minor matter.
The failure to empower people with disabilities through remote work options will prove costly to the bottom lines of companies. Not only are limiting their talent pool by 15 percent, they’re harming their ability to recruit and retain diverse candidates. And as their lawyers and HR departments will tell them, by violating the ADA, they are putting themselves in legal jeopardy.
By contrast, companies like Meta - and my clients - that offer remote work opportunities are seizing a competitive advantage by recruiting these underrepresented candidates. They’re lowering costs of labor while increasing diversity. The future belongs to the savvy companies that offer the flexibility that people with disabilities need.