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Opinion

Racial inequalities must not be allowed to infect the search for a Covid vaccine

Covid-19 vaccine trials must abandon the racist practices embedded in previous trials that have led to mistrust and fear among the world's black communities, write Banele Kunene, Mabel Rosenheck and Abie Rohrig

16 August 2020 - 00:02 By Banele Kunene, Mabel Rosenheck and Abie Rohrig
Any Covid-19 vaccine trial, especially a human challenge trial, must make informed consent an imperative, say the writers.
Any Covid-19 vaccine trial, especially a human challenge trial, must make informed consent an imperative, say the writers.
Image: 123RF/Riccardo Lennart Niels Mayer

Hlengi, a university student in SA, has witnessed the debilitating impact of the Covid-19 pandemic in the country: economic paralysis, long bread lines and overstrained hospitals.

She's in favour of a human challenge trial — where participants are intentionally infected with the coronavirus to speed up vaccine development — because it could get everyone a vaccine sooner. But, she said, she would never participate in such a trial herself. She does not trust that her life would be valued the same as a white life in a risky trial.

Jordy, Congo-born and living in SA, is entirely against challenge trials. Black Africans have historically been deceived, exploited, and treated as "guinea pigs" in clinical research, she said. And once a vaccine is produced, Jordy doubts it will be made available to Africans. Why would she risk her life for a trial if the vaccine will not go to her family?

And then there's me — Banele Kunene. I'm a black South African studying at Wits University. I understand the perspectives of my friends. I'm also part of 1DaySooner, an organisation that's supporting human challenge trials, and I've volunteered to be intentionally infected with the virus in order to speed up vaccine development. (More than 32,000 people from over 140 countries, including all of the authors, have signed up for such a trial.)

MORE LIKELY TO DIE

Every day we wait for a vaccine, about 5,000 people die from Covid-19 — and these deaths are not distributed equally.

Covid-19 compounds a global legacy of systemic racism in health care that's resulted in a chasm of health disparities. Cases in Africa have doubled in the past few weeks, causing lockdowns that may push 23-million people into poverty.

In the US, Covid-19 is killing black Americans at higher rates than any other race in nearly every state. Black people are 30% more likely than white people to have underlying conditions that exacerbate Covid-19, and are 50% more likely to be uninsured.

Minority populations have been both dehumanised in vaccine trials and neglected in vaccine distribution

Creating a vaccine just one day sooner would save thousands of lives, disproportionately the lives of black people around the world.

I chose to volunteer because it's a tangible way to save lives and help those around the world who've suffered the most during this pandemic.

Yet I am aware that the history of vaccine research is distressingly one of racial exploitation and neglect: minority populations have been both dehumanised in vaccine trials and neglected in vaccine distribution.

Any Covid-19 vaccine trial must abandon the racist practices embedded in previous trials that have led to mistrust and fear among black communities around the world. Vaccine developers must commit to anti-racist vaccine development by championing the primacy of informed consent and equitable vaccine distribution.

MEDICAL RACISM AND INFORMED CONSENT

It makes perfect sense that Hlengi and Jordy are cautious about human challenge trials. All over the world, there's been a long history of medical experimentation in which scientists did not receive the informed consent of black trial subjects.

In 1801, Thomas Jefferson, mimicking vaccine pioneer Edward Jenner, vaccinated one of the enslaved people he owned without consent, then deliberately infected him with smallpox to prove that the treatment worked.

Over 100 years later, the Tuskegee syphilis experiment was one of the most egregious ethical violations of medical ethical standards in the 20th century. Researchers knowingly did not treat 400 black men for syphilis, even after penicillin was shown to be an effective treatment, allowing torment, pain, and over 100 deaths.

Then, in 1994, the World Health Organisation and Zimbabwe's National Institute of Health Research funded a study in which 17,000 HIV-positive Zimbabwean women were given experimental antiretroviral therapy without their informed consent.

Two years later, Pfizer settled a lawsuit after it illegally tested an experimental antibiotic drug on 700 children in Nigeria in a trial in which 11 children died.

Today, two French scientists have perpetuated the message that black people can be used as guinea pigs by suggesting that a Covid-19 vaccine trial take place in Africa, "where there are no masks, no treatments, no resuscitation ... A bit like as it is done elsewhere for some studies on Aids. In prostitutes, we try things because we know that they are highly exposed and that they do not protect themselves."

French scientists have perpetuated the message that black people can be used as guinea pigs by suggesting that a Covid-19 vaccine trial take place in Africa

Any Covid-19 vaccine trial, especially a human challenge trial, must make informed consent an imperative. Researchers need to be entirely transparent about the risks of a trial to volunteers, and before a trial begins there should be virtually no doubt that volunteers understand those risks. And in light of this racist history, informed consent must be a priority when reaching out to the black community.

Black research scientists should be involved with Covid-19 vaccine trials, since a lack of diversity among researchers has reinforced a lack of diversity among patients. And, rather than assuming that they know the best ways to communicate risk, research scientists should consult data about what communicative methods are most effective among different races.

(In the past, researchers have overestimated the importance of having a family member in the room when trial risks are explained to black patients and underestimated the importance of including written summaries about each type of risk.)

History has made it utterly clear that faith in the benevolence of medical research is a white privilege — a privilege felt by the two white American authors of this article, Mabel Rosenheck and Abie Rohrig. Failing to pay close attention to this history and its present-day effects in a Covid-19 trial would be unjust and would jeopardise the trial data by reducing the diversity of volunteer subjects.

EQUITABLE VACCINE DISTRIBUTION 

Creating an effective Covid-19 vaccine is no guarantee that it will be available to those who need it. Black Americans have lower influenza vaccination rates than white Americans, and one in five children in Africa still lacks access to life-saving vaccines. It is not inevitable that a Covid-19 vaccine will only be accessible to wealthy white Westerners, but active steps must be taken to avoid this all-too-possible reality.

One of the lessons from the past is that vaccination has been successful when federal governments provide funding and leadership, as the US government did with vaccination assistance acts in 1955, 1962, and 1965 and as the World Health Organisation did in campaigns to eradicate smallpox and polio. The same must occur now: if left to the free market, a Covid-19 vaccine could be inaccessible to poor people worldwide.

Governments should continue funding the Gavi vaccine alliance's advanced market commitment to purchase billions of vaccine doses for worldwide distribution as well as technology that can be used to distribute a vaccine to rural communities at scale.

In the US, Chiama Woko, a health policy research scholar at the University of Pennsylvania, suggests that "using trustworthy spokespersons to appeal to crucial community values offers an effective route to changing African-Americans' hesitant attitudes towards a Covid-19 vaccine", a strategy pioneered by Black Panthers in the 1960s. Woko also notes that public health campaigns aimed at black populations tend to be more effective when they feature narratives of black people sharing their experiences.

This pandemic has exacerbated longstanding racial inequalities. The solution must not be embedded in that same racist history. Vaccine developers must prioritise rapid vaccine development, informed consent among trial subjects, and equitable vaccine distribution.


HOW VACCINES ARE TESTED

In the pre-clinical stage of testing, researchers give the vaccine to animals to see if it triggers an immune response.

In phase 1 of clinical testing, the vaccine is given to a small group of people to determine whether it's safe and to learn more about the immune response it provokes.

In phase 2, the vaccine is given to hundreds of people so scientists can learn more about its safety and correct dosage.

In phase 3, the vaccine is given to thousands of people to confirm its safety - including rare side effects - and effectiveness. These trials involve a control group which is given a placebo.

WHERE ARE WE NOW?

The World Health Organisation is tracking more than 170 teams of researchers working on developing a vaccine against Covid-19.

PRE-CLINICAL: Vaccines not yet in human trials: 139

PHASE 1: Vaccines in small-scale safety trials: 25

PHASE 2: Vaccines in expanded safety trials: 17

PHASE 3: Vaccines in large-scale efficacy trials: 7

APPROVED: Vaccines approved for general use: 0

Russia registered a Covid-19 vaccine, called Sputnik V, this week which has been granted regulatory approval after less than two months of human testing. It still has to complete final trials.

• Source: World Health Organisation (last updated August 11)


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