In mid-February, Lawrence Lacks, 82, announced that he, his son, and his daughter-in-law plan to sue Johns Hopkins University. The trio wants compensation for the university’s use of the cells that a Hopkins researcher took 65 years ago from the womb of Lawrence Lacks’ dying mother. Henrietta Lacks, then 31, was nearly illiterate. She was black. And she was not asked permission. The cancer cells, now famously dubbed “HeLa” cells, have produced myriad advances for medical research and untold billions of dollars for companies. The Lacks family—Henrietta’s adult children and their descendants—has never seen a penny. But at least now the world knows about them. Their story was documented in Rebecca Skloot’s best-seller The Immortal Life of Henrietta Lacks, which has been turned into an HBO movie starring Oprah Winfrey to premiere in April.
There is another woman—a nameless, faceless one—who has made just as big a contribution. In my new book, The Vaccine Race: Science, Politics, and the Human Costs of Defeating Disease, I call her Mrs. X. In 1962, Mrs. X, a mother of several young children, was married to an immature alcoholic who was often out of town for his blue-collar job—and who wasn’t much help when he was around. She couldn’t face another baby.
In Sweden, where Mrs. X lived, abortion was legal. But most doctors refused to offer the procedure. By the time she found a sympathetic, female gynecologist, Mrs. X was four months pregnant.
After the abortion, her 8-inch-long, female fetus was taken without her knowledge and its lungs dissected at the famous Karolinska Institute in Stockholm. The tiny purplish organs were packed on ice and flown to the Wistar Institute in Philadelphia, where a biologist named Leonard Hayflick cut them into innumerable pieces the size of match heads. Several lab-flask steps later, Hayflick had created the WI-38 cell line: a replicating group of normal human cells that, unlike other human cells then grown in the lab, did not become cancerous. That made them perfect vehicles for making vaccines against viruses like measles, rabies, and rubella. (Viruses can’t replicate outside cells, so vaccine-makers captured disease-causing viruses and grew them in lab-bottle cells—weakening the viruses enough that they didn’t cause disease when injected, or killing them outright before injecting them. This way, they would cause an antibody-generating immune response but not make vaccinees sick.)
The cells that Hayflick created from the lungs of Mrs. X’s fetus in 1962 have been used to make vaccines that have protected at least 300 million people—including about 150 million American toddlers. They were used to produce a safer and more effective rabies vaccine. They are micro-factories for making a vaccine against adenovirus, a troublesome respiratory infection that once plagued U.S. boot camps; 10 million U.S. recruits have been spared the disease since 1971. Most importantly, the WI-38 cells generate the vaccine against German measles, also known as rubella. This vaccine—the R in Merck’s MMR vaccine—has wiped out rubella in the Western Hemisphere. In doing so, it has averted untold millions of stillbirths, miscarriages, and elective abortions because rubella, like Zika, wreaks havoc on fetuses in the womb.
The WI-38 cells were also used to develop the vaccines that protect U.S. toddlers against chicken pox and the elderly against shingles. And Hayflick’s method, honed with the cells of Mrs. X’s fetus, was used to make another fetal cell line that has generated some 6 billion vaccine doses since 1966.
And what of Mrs. X? When Hayflick realized that the WI-38 cells were poised to become sought-after “vaccine factories,” he contacted the Swedish lab that had procured the lungs for him. There, a young, mannerly Swedish vaccine scientist with two small girls of her own was dispatched to obtain Mrs. X’s medical history, a few months after the abortion. She ascertained, by going back to Mrs. X and her physician, that Mrs. X and her family were free of infectious diseases and cancer, making the WI-38 cells acceptable to companies and regulators.
In the process, Mrs. X of course learned that her fetus had been taken without her permission. When I sought her out in 2013, she made clear that she was still angry about this. “They were doing this without my permission! This could not happen today!” she told my Swedish translator. Understandably, she wanted the whole episode left in the past; she had no interest in the lifesaving uses to which the cells had been put. And who can blame her? I told her I would not make her name public nor bother her again.
So Mrs. X will never seek to capitalize on her enormous, unwitting contribution to human health, even though companies will continue to do so. Merck alone made $1.64 billion last year on its MMR and chicken pox childhood vaccines. The company’s shingles vaccine, initially developed in the WI-38 cells, brought in another $685 million.
There are arguments and court decisions holding that this is OK, because researchers and companies are the ones that turn cells like HeLa and WI-38 into instruments of the common good. What’s more, it has been a long, long time since the HeLa and WI-38 cells were created. This likely means, experts say, that any demand for compensation has extremely low odds of succeeding. The court may well find that Johns Hopkins does not owe Lawrence Lacks, his son, and his daughter-in-law anything.
But there is still an argument for the university to offer generous compensation to the Lacks family, which has endured a great deal and received nothing for its pain. When I interviewed the prominent bioethicist Alta Charo about Mrs. X and the WI-38 cells for Nature, she touched on this question of morality. “If we continue to debate [compensation] entirely in legal terms, it feels like we’re missing the emotional center of the story,” she said.
The arguments raised by the cases of Mrs. X and Henrietta Lacks are far from over. In fact, scientists won a recent round in the ongoing debate. The federal government was poised in 2016 to implement a new regulation requiring U.S.-funded researchers to obtain patients’ one-time, written permissions for most scientific uses of their leftover surgical snippets, stripped of identifying information (though just because tonsils or thyroids are unidentifiable today doesn’t mean they will be in the future). Led by the National Academies of Sciences, Engineering, and Medicine, researchers complained vociferously of an impending paperwork nightmare that would slow important medical research. In January, the new requirement was dropped. Maybe in 50 years or so, we’ll see a movie about a lucrative medicine developed from one of these surgical leftovers—and the person behind that lifesaving drug.
This article is part of Future Tense, a collaboration among Arizona State University, New America, and Slate. Future Tense explores the ways emerging technologies affect society, policy, and culture. To read more, follow us on Twitter and sign up for our weekly newsletter.