S1E68 / Medical Racism Past and Present / Vanessa Northington Gamble, Harriet Washington, Rueben Warren

I've been explaining for at least 13 years that the Tuskegee Study is not at all the reason why African Americans are, quote, "afraid of the medical research system." We have to take people's fears seriously and try to figure out what is going on there.

Welcome back to Epidemic, the podcast about the science, public health, and social impacts of the coronavirus pandemic. I'm your host, Dr. Celine Gounder. In the late 1990s, Vanessa Gamble was giving a talk one day at the University of Illinois.

I must admit I was, uh, a bit stressed out. It was the day before I was to get my tenure decision.

Turns out Vanessa didn't have anything to worry about. She got tenure at the University of Wisconsin. And today, Vanessa Gamble is a professor of medical humanities at George Washington University. But back then, she was at the start of her academic career. It was the height of the HIV epidemic, and the African American community was hard hit by the AIDS crisis. In 1993, HIV became the leading cause of death in African Americans aged 25 to 44. It would stay that way until 1996, when highly active antiretroviral therapy for HIV became widely available.

So I'm giving this talk, and I talked about how there were African Americans, some African Americans who believed that HIV was introduced in the African American community.

Vanessa didn't think this was true, but as a physician and expert on the history of race in American medicine, she understood why some did. She laid out the reasons why this belief was so common in the African American community.

This is why I think some African Americans believe it. Their housing is poor. They can't get a job. And all of a sudden, you know, the government is there to want their blood. And in the case of COVID give them vaccines. So what's going on here?

But her take wasn't well received.

So a student gets up and says, you're an MD-PhD. You know that this is being introduced in our neighborhood. And I basically told them why I did not believe it. But I understood why he did.

Then the former dean of the medical school stood up to confront her too.

And he said, "You're an MD, PhD." Like, at that point I said, "Yes, I do know that." And he said, "How could you even bring this up in an academic talk?" That student didn't want to hear Vanessa debunking myths about HIV being introduced into African American communities.

But the dean didn't want to hear about the very real fears in the African American community either.

And so here you have two sides arguing, but not talking to each other.

This divide is not a new development. Many look to one event as the source of this distrust.

In the 1990s, there was a lot of discussion about HIV/AIDS and the African American community and the syphilis study.

The study Vanessa is talking about is the United States Public Health Service syphilis study at Tuskegee. If you've only heard about one case of medical malfeasance, it's probably this one. The U.S. federal government withheld treatment from Black men with syphilis for decades. This study has become the go-to example for the sort of institutional wrongdoing that has made many Black Americans so dubious of medical professionals.

And at the time, it was widely believed that because of the syphilis study, that African Americans would not participate in clinical trials, that African Americans would not take particular medications against HIV/AIDS.

Today, in the age of COVID these same assumptions are still being made about African Americans. As vaccines roll out across the country, understanding the reasons for distrust is more important now than ever. Black Americans are twice as likely to die from COVID as white Americans. Despite this, polls show that African Americans are less interested in receiving the vaccine than other groups, though it's important to note that those numbers are improving. For people of color who do want the vaccine, inequities in U.S. healthcare are making access to vaccines more difficult. But assuming the syphilis experiment is the only reason why some African Americans are undecided about the vaccine ignores hundreds of years of medical history, as well as race racism in the present day. This is the third episode in our series on vaccine confidence. To get a fuller picture of the African American experience with vaccines and public health, we're going to look at the history of medical experimentation on Black people.

So that underscoring this study was this idea that Black bodies were different.

How this legacy carries on to the present day.

These are really troublesome changes we've made that serve to erode informed consent.

And what lessons we can learn from these stake to help get more people vaccinated.

If you've got a history of a, a system that has disproportionately disaffected a population, then why would they feel comfortable in participating in anything to benefit that population?

Today on Epidemic, trustworthiness and the Black experience of American medicine. The history of experimentation on Black Americans dates all the way back to slavery. People who owned slaves would use them to study the human body.

Dr. John Kenny, who was Booker T. Washington's physician, he said that there needed to be a monument for African Americans for their contributions to surgery who contributed through what he called the guinea pig route.

Many of these doctors wrote at length about their experiments on enslaved people. They were lauded for their discoveries, but their means were barbaric. J. Marion Sims was one of these doctors. Widely regarded as the father of gynecology, Sims experimented extensively on enslaved women. He tested new surgical techniques on these women without anesthesia.

These women went through these unbearable experiments. J. Marion Sims talks about how, you know, one of them, the pain was so intense, I thought she was going to die.

Doctors experimenting on unwilling patients. It was a real-life horror film. Even after slavery was outlawed, this distrust of medical professionals in the African American community became deeply ingrained.

There were, you know, beliefs strong beliefs that these figures called night doctors would take you to the hospital to experiment.

This wasn't far-fetched. At the time, it was commonplace for Black cemeteries to be vandalized. Bodies were dug up in the middle of the night and sold to medical schools, many in the North, to teach medical students anatomy.

It was a folk belief, so it might not be quote-unquote true, but people believed it and they acted on it and contributed to their sentiments towards the medical profession.

And this exploitation of Black bodies for the sake of medicine didn't just stop after the turn of the 20th century. It simply took another form. Well, I was born in Macon County, Alabama, which is Tuskegee. That was the voice of George Key in 2002. He was a participant in the Tuskegee Syphilis Study.

First time we went, there was 3 or 4 of us went together and they give us some kind of milk, something like milk to swallow. I don't know what, that's been so long, I don't even know what that was for.

Alongside almost 600 other Black men, George was recruited when he was in his 30s as part of a study that had a powerful sponsor.

This was a study that went for 40 years. Years that was conducted by the United States Public Health Syphilis Study.

The United States Public Health Service started the study in 1932 in Macon County, Alabama. The goal of the experiment was to observe what untreated syphilis would do to the body.

Many times people want to look at the syphilis study as a violation of research ethics. That is a part of the story, but another part of the story is this idea that Black bodies were inherently different than white bodies.

Syphilis was a deadly sexually transmitted disease. Untreated, it caused sores and ulcers, and eventually it could spread to other parts of the body, even the heart, blood vessels, eyes, the brain, and the spinal cord. It could cause weakness, abnormal, unsteady gaits, loss of coordination, dementia, and much more. When the study began in the 1930s, there was a treatment for syphilis. A toxic combination of arsenic and bismuth or mercury. This treatment was withheld. And when a far better treatment came along in the 1940s, penicillin, a more effective and safe treatment, that too was withheld from these men.

I think it's very important for people to know that this was not a hidden study.

Over the course of 4 decades, the men were given placebos and told that they were effective treatments for syphilis. The United States Public Health Service made sure that even if these men went to other doctors, they would still not receive treatment.

There was a series of medical and public health articles in prominent journals which talked about the syphilis study. So it was well known in the medical community.

The study was hiding in plain sight. And then in 1972, an employee of the United States Public Health Service leaked the story to a reporter., and a national outcry shut the study down. The surviving members of the study, people like George Key, received a $10 million out-of-court settlement, but the U.S. government did not admit to any wrongdoing.

So a group of us met at Tuskegee in 1996 to discuss getting a presidential apology for the victims of the syphilis study. I got to become chair because I had the biggest mouth in the room.

In 1997, the committee successfully campaigned for then-President Clinton to apologize.

We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry.

The public apology was a victory, but even Vanessa acknowledges it was mostly symbolic.

Has it done a lot? Probably not. But it did do something for the men and their families. And I think we sometimes think of them in the abstract, but to have President Clinton say, "I am sorry," to the men who were able to come and the men who were, and their families who were in Macon County, brought to bear that these were human beings who needed and should have been apologized to by their government.

In the wake of the United States Public Health Service study at Tuskegee, new guidelines were issued to prevent a similar incident from taking place. But that hasn't been enough. Harriet Washington is a writer whose work focuses on medical ethics.

It is not only the historical abuse, but also the contemporary abuse.

We'll hear how a recent study echoes Tuskegee in more ways than one, and what the medical establishment can do to earn trust and make itself more trustworthy. That's after the break. For many African Americans, it's not the fear of vaccines themselves that define their skepticism. It's a general distrust of a system that for so long has not worked in their favor.

People are avoiding it because they have sometimes very logical reasons for not trusting it.

This is Harriet Washington. She wrote Medical Apartheid and Carte Blanche about the past and present of medical racism in American medicine. In Carte Blanche, she wrote about an experiment that involved polyheme. Polyheme is a red blood cell substitute that works by carrying oxygen to tissues throughout the body.

So around 2005, 2006, Northfield Laboratories, the maker of PolyHeme, wanted to have it tested and get FDA approval so they could market that, this and sell it. And the military also wanted it to be approved so they could use it for soldiers.

The PolyHeme study took place in some two dozen cities across the United States in the mid-2000s. The goal of the study was to observe if PolyHeme could be used in an emergency for trauma patients when there was no blood on hand for transfusion. But there was a problem.

They tested it on urban streets with everyday Americans, but they did it without getting their permission. There was no informed consent. There was not even any simple consent. They simply put it on ambulances.

If you were a trauma patient in a participating city, you were automatically enrolled in the study. And all of this was completely legal. In 1996, the FDA made emergency research exempt from informed consent requirements.

The law was a change to the Code of Federal Regulations that regulates human medical experimentation. And it lays out the conditions under which a researcher can enroll someone in their research study without asking their permission and without telling them about it.

The rationale was that trauma victims are often unconscious and cannot give their consent. But this is a big assumption. Eventually, the study's organizers told residents participants, they could opt out of the study. All they had to do was wear a bracelet.

The study was inundated with requests from people who wanted bracelets. But the study said it ran out of bracelets. And you know how long it took them to get a supply of bracelets in? One year.

There were other issues too. Researchers did not randomly select participants. They were very intentional about where they conducted the study.

The ambulances that were chosen to carry the PolyHEM were those that only serviced areas of the city that were Black and Hispanic. So research studies are often designed in order to recruit only people of color, but that's not explicitly stated. You will not know that unless you examine the data.

And worst of all, PolyHEM wasn't saving lives.

In the end, they analyzed the data and found out that people that got the artificial blood, people who got Polyheme, were more likely to have a heart attack or to die.

Just like in Tuskegee, these people were not given the opportunity to make an informed decision about whether or not to participate in these experiments, and the results of that were fatal for some.

This means that people were sickened and died in research study that they never gave their permission to be in. That they never knew that they were in.

The Tuskegee and Polyhymn studies are just two examples in a long history of mistreatment. And that history and the present of medical racism in medicine are impacting some people's willingness to get vaccinated. Understanding all of these factors is important, but focusing solely on the Black people who don't get vaccinated ignores the fact that there are many who do. Here's Vanessa Gamble again.

You hear people saying, I did it because I wanted to protect my grandmother. I did it because I heard that Black people are dying more from COVID-19, and I wanted to do my part. If we keep talking about, well, Black people don't want the vaccine, that it takes the eye off are really looking into the inequities in terms of distribution.

Harriet says some distribution policies that seem colorblind aren't. Think about the policy that prioritized older Americans first for vaccine access.

Certainly sounds compassionate, certainly sounds right. And yet that policy operates against their getting access to the vaccine because African Americans and Hispanic Americans and Native Americans are all young populations. You look at people over 90 years old, the rate is twice as high among whites as Blacks. There are fewer people in that age group, so fewer African Americans are achieving that priority.

The process to sign up for a vaccine is itself Byzantine and onerous. People with more access to computers, internet, and reliable transportation are more likely to get vaccinated. Harriet says the narrative that Black Americans are skeptical of healthcare and things like vaccines misses the point.

The real problem is the untrustworthiness of the healthcare system. If you don't look at both of these factors, if you only look at African American behavior, you're pathologizing African Americans. The message then becomes it's African Americans who are creating their own problems by refusing access. And that again is perpetuation of this old, you know, tendency to blame African Americans for their own diseases. If we make a trustworthy healthcare system, then people will flock to it. We won't have to induce them.

So how can these institutions make themselves more trustworthy? Reuben Warren, a professor of ethics at Tuskegee University, has one idea.

If you shift the conversation from trust to trustworthiness, then the burden of responsibility becomes those who are seeking trust. And then ask the folks you're asking to trust them.

Shifting the conversation means that medical institutions have to participate in an open dialogue with the African American community.

That's a well-established scientific methodology called focus groups. We do them all the time and ask the folks what do they need, what do they feel that you need to do in order to be trustworthy, and they'll tell you. You also have to seek out those organizations, those institutions that have had a history of trustworthiness.

Faith-based organizations and healthcare workers of color can help open the door to these conversations, but they can't do this work on behalf of these medical institutions.

So you have to engage people in the beginning, in the middle, and at the end if you want them to benefit from the work that you're doing.

Harriett says that proving trustworthiness starts with asking for consent.

I always use the example of the IRB system, institutional review boards.

Institutional review boards are intended to review and monitor research involving human subjects. They're supposed to protect the rights and welfare of study participants and to screen for ethical concerns.

So what I proposed in Medical Apartheid is that we should have instead IRBs that are composed half of researchers and scientists and half of people drawn from the subject pool, people who are part of the group who will end up being in the research study or being in the treatment group. Only then can we expect to have any kind of parity.

Institutional review boards that are representative of people being studied would help increase African American participation in clinical trials too. Vanessa Gamble agrees.

You know, I've had relatives say, well, why should I do this? They only used white people. 'Well, does it work on me?' Well, I think if you see that Black people are part of the clinical trials, that that will help assuage some people's questions and concerns.

One critique of clinical trials has been that there are often no long-term resources for people that take part. Rubin says that we need to change that.

What assurances can you provide that if something, by whatever reason, goes wrong, not in the clinical trials, not in the immediate response to the vaccination, but in the long term, and I have no health insurance, then I'm really left out in the cold. So those kind of assurances, I think, says to the population, we're concerned about not only about the vaccination, but about you as an individual.

And in the instances that those agreements are broken—

There have to be consequences. You see, you can't just say, trust me, when the trust has been violated. And so if there are no consequences to behavior, be it intentional or unintentional, that's inappropriate, then that is likely to repeat itself.

Demonstrating trustworthiness takes time, hard work, and patience, but it can be done.

It's not new. We know what to do. The question is, are we going to do it?

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