Justice for HeLa heirs reveals lingering medical wrongs

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Like many women, I push a tiny pill out of a rectangular pack each day and pop it in my mouth.

For years, I never gave that act much thought. Birth control pills are one of the most common forms of contraception and have allowed countless women the freedom to decide when they want to start their families. When a doctor first prescribed them to me, that's how I viewed them — as a way to plan for the future. I saw them only in the context of looking forward.

But that changed several years ago. I grew curious about the history of those pills and decided to look back at how they came to exist on the market.

What I found showed me how little we know about the dark parts of the country's medical practices. I found myself reading about one medical breakthrough after another that used Black and brown bodies, often without full disclosure to the participants, to achieve advancements that benefited the masses.

The pill became known for its role in women's liberation, but a lesser-known part of its story are the women who participated in the first large-scale human trial of it.

In the mid-1950s, before the pill was deemed safe enough to market to women throughout the country, it was tested on women in Puerto Rico who lived in a public-housing project. Based on reports, some were illiterate and many were desperate for birth control.

At the time, hopes were high for the pill, but little was also known about its side effects. It had reportedly been tested on rats and rabbits, and on a small sampling of women in a medical practice in Massachusetts.

In Puerto Rico, researchers gave the pills — at much higher doses than are prescribed today — to as many as 1,500 women for years. Three women in the trial died, but no autopsies were conducted, so it remains unclear whether their deaths were linked to the drug. After the Food and Drug Administration approved the pill as a contraceptive, women across the United States started complaining about the side effects. Later, after concerns arose that the pill could be linked to strokes, heart attacks and blood clotting, congressional hearings were held.

But those health risks weren't the only reason people later questioned the ethics of what happened in Puerto Rico and compared it to the shameful Tuskegee syphilis study, in which the government conducted research on hundreds of Black men for decades without their informed consent. A 2004 Orlando Sentinel article that featured several of the participants in Puerto Rico described them as "unwitting pioneers."

"It remains one of the most controversial chapters in the island's history — notably because participants weren't informed that they were guinea pigs in an experiment to test the world's first birth control pill, a tablet with three times as much hormones as today's version," the article reads.

I wrote about that human trial years ago, before I became a columnist. But on Aug. 1, I found myself thinking about it again after learning that the family of Henrietta Lacks had settled its lawsuit against Thermo Fisher Scientific, a biotech company that had been accused of profiting off her "immortal" cells.

For Lacks's descendants, the settlement marks a long-overdue victory. It comes more than 70 years after a doctor at Johns Hopkins Hospital took her cervical cells without her consent and the hospital shared them with researchers.

Lacks, a Black tobacco farmer who grew up in southern Virginia, was a mother of five living in Baltimore when she was diagnosed with cervical cancer. She was being treated in a segregated section of the hospital when those cells were taken and discovered to be extraordinary for their ability to grow outside of the human body. Her cells, known as "HeLa" cells, have since been credited with helping researchers achieve numerous scientific and medical discoveries. A few of them: a polio vaccine, an HPV vaccine, coronavirus vaccines, cancer treatments and in vitro fertilization. Her cells were even sent into space to test how human tissue would react under those conditions.

Those achievements are incredible. They are also ones that Lacks didn't live long enough to see and that, even as companies profited off those bits of her body, her descendants never received compensation for. That is, until now.

The amount of the settlement was not revealed, but a specific number wouldn't have changed the significance of the moment. It was a win for the family. It was also a win for the public. The lawsuit that led to it told of a history of racism in the country's medical system and the need to right those wrongs.

"The exploitation of Henrietta Lacks represents the unfortunately common struggle experienced by Black people throughout history," the lawsuit read. "Too often, the history of medical experimentation in the United States has been the history of medical racism."

Medical racism, we know, is not only a thing of the past. Black women are still more likely to die from childbirth than their white counterparts. But recognizing and addressing past wrongs is a start to creating a medical system that treats all bodies with the same respect and consideration, no matter a person's race, ethnicity or financial situation.

In an article my colleagues Dan Morse and Gillian Brockell wrote about the settlement, they told what happened after Lacks's death: "For decades, the family struggled to carry on without their mother. One of her daughters, Elsie, who had disabilities, was institutionalized and died at 15 in 1955. In the 1970s, two decades after Lacks's death, members of her family started getting strange phone calls from researchers requesting blood samples. Their medical histories were published in research papers without their knowledge. One night, at a dinner party, a guest asked family members if they were related to the source of the famous HeLa cells. That's how they found out cells from their mother were still alive all over the world."

Many of us know about Lacks because her family's story was captured in a bestselling book titled "The Immortal Life of Henrietta Lacks" and a movie by the same name. But there are many Black and brown people who remain mostly unknown even though their bodies were used to create the comforts we now take for granted.