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March 7, 2021

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In Our View: Lacks bill aims to right health care wrong

The Columbian
Published:

Many Clark County residents likely have a passing familiarity with the remarkable story of Henrietta Lacks, thanks to a local high school. And although Lacks died in 1951, her influence continues to grow.

The U.S. Senate last week passed the Henrietta Lacks Enhancing Cancer Research Act, which would require the federal government to publish a report on government-funded cancer research trials, including the amount of participation by underrepresented populations and the barriers to participation. The House passed the bill by voice vote earlier this month.

Lacks, a Black woman who lived in Baltimore, was treated at Johns Hopkins Hospital for cervical cancer. Without her knowledge or consent, doctors took her cancer cells and used them for medical research. Studies found that, while most cancerous cells died quickly, Lacks’ continued to live and grow. Her cells became the first naturally “immortal” cell line from a human, reproducing indefinitely under the right conditions.

The resulting HeLa line of cells has proven crucial to scores of medical researchers and moneymaking advancements. Lacks’ family went for decades without knowing about the research or receiving any apologies or compensation.

A bestselling 2010 book by Rebecca Skloot, “The Immortal Life of Henrietta Lacks,” helped publicize the story and its influence on modern medicine.

“There isn’t a person reading this who hasn’t benefited directly from research on HeLa cells,” Skloot told The Columbian in 2017, prior to a speaking engagement in Vancouver. “They helped create the vaccines we get to protect against polio or any number of other diseases, they helped lead to gene mapping, stem cell research, our most important cancer medications, you name it.”

Locally, Lacks’ story is fairly well known, thanks to Henrietta Lacks Health and Bioscience High School in the Evergreen school district. The science magnet school opened in 2013.

“It’s important our students know the story,” Principal Julie Tumelty told The Columbian last year. “We have all that consent now and she didn’t have that. While so many good things came from it, there’s a lot of heartache through her family.”

That heartache is the purpose of the bill being sent to the president. Modern medical ethics prohibit actions taken without consent of a patient, and Lacks’ story reflects a long mistrust of medical institutions — particularly among minority and disenfranchised populations.

In one egregious example, from 1932 to 1972 the federal government oversaw the Tuskegee Syphilis Study. That experiment tracked the progress of syphilis among Black men in Alabama while falsely telling the subjects they were receiving free health care.

The lingering impact of that and other medical trials targeting minorities can be seen in response to the coronavirus pandemic. Media reports have detailed that minority groups have been disproportionately reluctant to sign up for treatment trials, and public opinion polls suggest that minorities are less eager than whites to receive immunizations approved by the government.

The latest bill will provide transparency and improve diversity in medical trials. As Sen. Ben Cardin, D-Md., wrote, it “will help ensure that all people — especially those from communities of color — are fairly represented in cancer trials and ultimately receive the treatments they deserve.”

In other words, it is a fitting addition to the rich legacy of Henrietta Lacks.

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