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vaccine trials and the issue with white, educated women

a vaccine will only be successful if trials reflect our diverse communities.

vaccine trial racial disparities more urgent than speed
vaccine trials for covid-19 need to be representative of the populations that are most likely to get covid-19 to properly work. getty images

if you are black or hispanic in the united states, you are two times more likely to die of covid-19 than someone who is white or asian. in chicago alone, black people account for 72 per cent of deaths from the virus. new york has seen thousands of transit workers fall ill, a labour pool where ethnic minorities make up 70 per cent  of the workforce.

why, then, are vaccine trials predominantly composed of “ white, college-educated women ,” who are least at risk of exposure and death?

“if you want a vaccine to be maximally effective and you test it on a totally different population, such as white, college-educated women, you’re making assumptions that any genetic differences don’t matter,” says colin furness , assistant professor at the dalla lana school of public health. “ideally, you want to test the same vaccine on the population you’re using it on. you want to be able to go to where there is more risk. if you’re testing on a population that’s much less likely to get exposed, you’re going to have the vaccine [based on] misleading results.”

part of the reason for the discrepancy in the racial representation of trial participants is cost.

furness says that while trial recruitment that accounts for different populations — called stratified random sampling — is more important than recruiting people who are simply “keen on being guinea pigs,” it also takes more time and money. a 2003 mayo clinic study on minority recruitment  found that recruiting minority participants cost nearly five times more than recruiting white participants.

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in addition to cost, recruiting minority communities  takes time, requiring engagement with these communities, using culturally sensitive outreach specialists and patient navigators, as well as support for special education, transportation, and childcare.

history of distrust

another reason for the underrepresentation of people of colour in clinical trials could be rooted in a long history of mistreatment of these communities in research.

from taking human cells without consent to unethical human experimentation, there are numerous examples that have lead to today’s mistrust in the medical system. born 100 years ago, henrietta lacks was an african american woman lived with aggressive cervical cancer. without her knowledge or consent, doctors took samples of her cancerous cells which continued to reproduce in labs with remarkable durability and  survivability. lacks died at the age of 31 in 1951, but her cells — called the hela line — are immortal to this day. hela cells have helped multiple medical breakthroughs, from developing the polio vaccine, to studying leukemia, the aids virus, and advancing cancer research. to this day, hela cells are used to understand covid-19 .

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for decades, lacks’s name and medical records were published in the media, her cells’ genome published in journals — all without consent from her family. none of the profits the biotechnology companies made from her cells were given back to her family.

in a more recent example, u.s. doctors exploited 600 african american men in an experiment to “observe untreated syphilis.” now infamously k nown as the “ tuskegee study, ” t he majority of participants did not receive treatment that had already been made available, they were not aware of the experiment and were misled and recruited under the guise of receiving free medical care for “bad blood.” the 40-year-long study ended in 1972.

understandably, u.s. polls show that black americans are less trusting of medical research than white or hispanic people. in a pew research center survey conducted this spring, just 54 per cent of black adults said they definitely or probably would get a covid-19 vaccine, whereas 74 per cent of hispanic and white adults said they would.

vaccines need to be proven in the real world

vaccine efficacy and effectiveness are important measures for assessing its success.
“ideally, you want the the efficacy and effectiveness to match,” says furness.

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efficacy is when a vaccine is proven to work in a lab, while effectiveness is seen in outcomes in the real world — outcomes that can be skewed if the vaccine is trialled on people who do not fully reflect the community.
“you want your lab results to be the same in the real world.” he says. “the way you do that is to make sure you have representative subjects. you need to be testing broadly so you’re approximating the real world as much as possible.”

dduong@postmedia.com | @dianaduo

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