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How are members of a society asked to trust medicine when there are many historical reasons why they do not trust medicine and doctors?

It’s a dilemma American nurse Victoria Baptiste faces every day as she travels through Baltimore County, Maryland as part of her job at a mobile clinic to administer vaccines against the Corona outbreak.

And one question has been asked repeatedly over the last couple of years, mostly by his black patients, which is: we’ve been used and exploited in trials in the past, how can we now trust this vaccine?

The immediate trigger for this question is often posts containing inaccurate information that they have come across on Facebook or Twitter. But his black patients’ fears didn’t just stem from online misinformation—their distrust of medicine and the U.S. healthcare system goes back much further.

“When they start telling their stories, they say, ‘Remember Tuskegee and Henrietta Lacks, they’re always experimenting with people of color,'” says Victoria.

Tuskegee was a 40-year experiment conducted by the US government in which hundreds of black men were deliberately left untreated for syphilis, without knowing it.

But after those spotlights came on, new regulations were introduced in 1974 that require the “informed” and voluntary consent of everyone involved in any scientific research.

Informed consent means obtaining a person’s permission before any medical procedure or participation in clinical research, after explaining to him all aspects, effects and consequences of the procedure or participation in research.

Informed consent must have been given on the basis of a clear appreciation and understanding of the facts, implications and consequences of the procedure.

As for Henrietta Lacks, Victoria personally is one of the most knowledgeable about the details of the immoral history of medical research associated with this name, as Henrietta is her great-grandmother, the mother of her great-grandfather Lawrence.

Henrietta Lacks was an African American woman who died at age 31 of cervical cancer in 1951 and whose cells were used in medical research without her or her family’s consent.

During Henrietta’s cancer treatment, some tissue was scraped from her cervix and stored in a so-called “petri dish”, to be used in research into cells that could be studied and tested outside the body.

Henrietta is not told what happened. Neither she was informed of the full effects of her cancer treatment, Victoria told me.

She was on radium and radioactive material was sewn into the lining of her cervix in an attempt to destroy the tumor. This was an acceptable treatment at the time, but she was not told it could cause infertility and render her unable to have more children.

While cell samples taken from other people died rapidly despite great efforts by scientists, Henrietta’s cells not only remained alive, but multiplied at a rapid rate, which led scientists to describe them as “immortal” cells. “.

The exponential multiplication of the number of these cells, characteristic of her cancer, was devastating for Henrietta, but it was a revolutionary discovery for science.

Conserved cells from Henrietta, which became the first immortal human cell line, have been used to understand how diseases affect the body, as a model for testing early treatments, and to improve the speed and safety of medical research.

And she produced from Henrietta Lacks’ cells, large-scale new living cells, and became famous in the world of medical research, and was nicknamed “HeLa”, and contributed to the understanding of cervical cancer, tuberculosis, Ebola, of HIV, as well as contributing to research on Children’s Polio, Human Papillomavirus (HPV), and COVID-19 vaccines.

Millions of people have benefited from the results of experiments and research using HeLa cells, and pharmaceutical companies using them to test their products have made billions of dollars. But the Lacks family has not received a single penny from these earnings. At one point, some family members needed treatment but couldn’t even afford health insurance.

The family did not know the details about the “Hela” cells, until after investigations by the author of scientific fiction, Rebecca Skloot, who wrote a book about the case called “The Immortal Life of Henrietta Lacks” and it became a bestseller.

And when Victoria says she understands why people don’t trust the pharmaceutical industry, she means her great-grandmother’s cell story.

Victoria grew up hearing the story of her mother that her grandfather, Lawrence, lost before reaching adulthood. Henrietta was a mother of five, she cared for everyone, wanted to have more children, loved to cook and dance, and cared about her looks.

Victoria and a group of her cousins, still her best friends, spent their childhoods running and playing around Henrietta’s house, where her husband David, who helped Victoria become a nurse, remained a resident.

Victoria says: ‘Grandpa David had to live with diabetes, and I was a little girl then, and I was always very curious, asking questions like ‘Why give yourself a right? What’s the use of this?’ He’s always been very patient with me.” Eventually, Victoria learned how to give her great-grandfather insulin injections.

As of early 2020, Victoria was working as a nurse in the renal unit of a hospital. But when the Corona pandemic hit, her work changed dramatically. Like many health care workers, she feared bringing the disease home.

To avoid the exhaustion caused by hospital work during that difficult time, and with her desire to continue helping people, Victoria in 2021 started work administering Corona virus vaccines and was traveling around the United States.

She soon realized that she had a special gift for working with people who were anxious or hesitant about vaccines and had questions about them, guiding them to the best research and helping them find information on their own.

The story of her great-grandmother, Henrietta Lacks, was always on her mind: “Knowing my family history, I don’t want anyone else’s family to go through the same situation. I don’t want them to feel like they’ve been silenced, or be a silent voice like Henrietta,” she says.

And Victoria knows well, from her personal relationship with the dark side of what has been done in the name of science, that asking patients to ignore the rumors spread on the Internet and put their trust in science is not convincing enough.

“I will never try to sidestep these difficult issues,” she says.

“Yes, those things happened to Henrietta. We’ve come a long way since then. We’re still fighting to make sure that kind of injustice doesn’t happen again.”

But at the same time, the coronavirus was disproportionately affecting Black people, and vaccines were the most powerful way available to prevent serious disease and avoid death.

Victoria believes in acknowledging and addressing the real problems and mistakes occurring in medicine and the pharmaceutical industry, while also recognizing the importance of collected independent data on COVID-19 vaccines, which saved an estimated 20 million lives in their first year of life use.

Victoria explains to her patients how things have changed since Henrietta, including safeguards such as the establishment of the Institutional Review Board, whose job it is to ensure research is conducted ethically and protect those involved in biomedical research, and ensure that informed people get the consent of all participants.

“We’ve come a long way since 1951,” he says, “and when doing any research there are a lot of checks and considerations that need to be taken into account” before bringing the idea of ​​participating in research to the public.

But that doesn’t mean there aren’t more problems to solve.

In addition to Victoria’s day-to-day work as a nurse in her family’s Hela 100 initiative, she is also an ambassador for the World Health Organization to eliminate cervical cancer, which she considers her personal cause, and Victoria was chosen on the BBC’s list of most influential and inspiring women of the year 2022.

“We know what we know about cervical cancer today because of the loss of my family,” she says.

Cervical cancer is one of the most common diseases among blacks in the United States.

Victoria also wants as many people as possible tested for HPV and to provide access to the vaccine and early treatment, to reduce deaths from cancer, which is more likely to develop after infection with types of the virus. papilloma, but it’s preventable in more ways than one, 90 percent of cases.

She says, “We lost a loved one to cervical cancer, but thanks to her, science was able to catch up with the vaccine.”