Henrietta Lacks, a Black mother of five who passed away in 1951 at 31, has saved more lives than nearly anyone in history. She has helped eradicate polio, create the HPV vaccine, and discover that humans have 46 — not 48 — chromosomes. She is in the National Portrait Gallery and has been to space. Yet, before the 2010 publication of Rebecca Skloot’s “The Immortal Life of Henrietta Lacks,” few knew that she existed.
Lacks discovered in 1951 that she had a “knot” in her cervix — an adenocarcinoma that would metastasize throughout her body and take her later life that year. Unbeknownst to her, a physician at Johns Hopkins named George Gey took cells from her cervical tumor and cultured them. Lacks’s were the first-ever human cells that grew and multiplied indefinitely outside of the human body. Her cells, known as HeLa cells, became the first immortal cell line. Medical researchers in the 1970s then collected cells from Henrietta’s children and experimented on them without informing them as to the purpose of the research. Despite her cells saving countless human lives and producing profits for the private sector, the Lacks family has still not seen a single penny of compensation from pharmaceutical companies.
From Oct. 19 to Oct. 22, the Cooper Series, in conjunction with the biology department, Writing Center, and Black Cultural Center among other campus entities, hosted a series of events titled, “Informed Consent, Privacy, and Social Justice: A Conversation Surrounding HeLa Cells.” The Series, funded by the William J. Cooper Foundation, “provides a varied program of lectures, performances and exhibitions which enriches the academic work of Swarthmore College.” The events included a screening of the film “The Immortal Life of Henrietta Lacks” starring Oprah Winfrey, a lecture by Rebecca Skloot and Lacks family members Jeri Lacks-Whye (granddaughter of Henrietta) and Shirley Lacks (daughter-in-law), a writing workshop with Skloot, and a discussion panel with the Lacks family members.
Dawn Carone, an assistant professor of biology at Swarthmore who specializes in genetics, applied for Cooper Foundation funding for what eventually became this series of HeLa-focused events. Carone uses HeLa cells both as a teaching tool for her genetics class and in her own research, which focuses on regulation of a genome sequence called Human Satellite II in cancer cells. She and biology Department Chair Nick Kaplinsky originally applied for funding in 2019 but decided to postpone the events due to the COVID-19 pandemic.
In an interview with The Phoenix, Carone said, “This story about Henrietta Lacks in her family and the cells that were taken from her is actually something that I teach in my genetics course. And so we decided to [apply for Cooper Foundation funding], but it’s so important and so timely that we wanted to bring it to the whole community.”
The lecture and discussion with the Lacks family on Thursday night began in LPAC cinema with a reading from Rebecca Skloot before the Lacks family members gave a presentation about the impact of the acknowledgement of Henrietta’s contributions for their family. Lacks and Lacks-Whye gave a presentation outlining how the family’s life has changed since 2010, when “The Immortal Life of Henrietta Lacks” was published. Photos shown in the presentation included those of the Lacks family at the Emmys when “The Immortal Life of Henrietta Lacks” was nominated for Outstanding Television Movie, Henrietta Lacks Health and Bioscience High School (“HeLa High”) in Vancouver, Washington, and a life-size bronze statue of Henrietta at the University of Bristol in the UK in Oct. 4, 2021, marking the 70th anniversary of her death.
In the discussion following the lecture, Skloot and the Lacks family members answered questions from the audience. All three women gave different answers as to what the most shocking aspect of Henrietta’s story has been for them.
Lacks-Whye answered that the most shocking aspect of Henrietta’s story has been “to know the tremendous contribution she has done for the world … not only as a medical phenomenon, but as a woman … [and] how she has helped so many people in so many different ways.”
Lacks answered, “That so many different names were given to her before we found out her real name,” referring to how the public would often mistake Henrietta’s name as Helen Lane, Helen Larson, and Henrietta Lakes before Skloot’s work introduced the world to the woman behind the cells.
Skloot shared that after the publication of the book, she used her first royalty check to establish the Henrietta Lacks Foundation, a charity that provides education, healthcare, and emergency expenses to individuals who have unknowingly or unwillingly contributed to scientific research. Such individuals include family members of Lacks, and descendants of victims of the Tuskegee syphilis studies and the human radiation experiments. Many individuals who read the book and were moved by the contribution of Henrietta Lacks donated, including a woman who survived cancer because of HeLa cells and donates one dollar a month because it’s all she can afford. No pharmaceutical companies who have made millions of dollars off of Henrietta, however, have contributed.
Skloot attributed her surprise about the biomedical industry’s pathetic response to the Henrietta Lacks Foundation to the emergence of the Black Lives Matter movement in 2013, which, in her words, “made a lot of institutions start looking more aggressively at their practices.”
This cognizance, however, did not extend to righting one of the most prominent instances of medical racism and exploitation in history.
The writing workshop with Skloot and later discussion panel with the Lacks family members took place on Friday in Singer 033. During the writing workshop, which was really a lecture, Skloot spoke about how she became a writer. Before deciding to become a science writer, Skloot dreamed of becoming a veterinarian and worked as a veterinary technician for a decade to support herself. She fell in love with writing during a creative writing course that she took to fulfill a foreign language credit. She first learned about Henrietta Lacks in a community college biology course as a teenager. When her professor spoke about Henrietta, he knew little about her other than that her body had produced the first immortal cell line and that she was a Black woman.
Over a series of years, Skloot, desperate to learn more about Henrietta, searched through encyclopedias and the early internet to learn more about her. Encyclopedias forewent mentioning Henrietta altogether, whereas some textbooks called her “Helen Lane.” Eventually Skloot found a series of articles from the seventies about the Lacks family, who only found out two decades after Henrietta’s death that her cells were still alive and being sold for twenty-five dollars a vial while they received nothing. She tracked down the phone number of Deborah Lacks Pullum, Henrietta’s youngest daughter who was only a few months old when Henrietta passed away of cervical cancer, and called her. That phone call became the basis of the project that would become “The Immortal Life of Henrietta Lacks,” which focuses as much on the cells as it does on Lacks Pullum’s journey to find out more about her mother.
Lacks Pullum passed away in 2009, before the publication of the book. Nevertheless, her legacy continues in the book’s pages, the film, and the inspiration that her tireless search for information gave to the people around her.
“I’ve never met anyone who was more inspiring to me than Deborah,” Skloot said at the lecture and discussion on Thursday night. “I’ve never seen anyone fight to learn something more than she fought.”
Lacks-Whye added, “My aunt was finally getting information instead of people taking information from her.”
Lacks-Whye and Lacks spoke more about Lacks Pullum’s legacy at the discussion panel, moderated by Nina Robinson ’23, Megan Wu ’23, and Moey Rojas ’22.
Lacks-Whye told the audience about her aunt’s habit of always carrying a dictionary to look up works that she didn’t know.
“She had that much confidence in herself,” Lacks-Whye said. “My aunt used that dictionary as a way of trying to learn more.”
Both Lacks-Whye and Lacks are outspoken advocates for medical autonomy and bioethics, and are accomplished in their own right. Lacks helps patients advocate for themselves, while Lacks-Whye works in the domestic violence unit of the judiciary system of Baltimore City. Audience members also asked the Lacks family members extensively about their partnership with the National Institutes of Health (NIH), a collaboration which requires researchers to apply to a six-member panel including Lacks-Whye for full access to the genomic data of HeLa cells.
Some members of the Lacks family are currently suing Thermo Fisher Scientific, a pharmaceutical company that generates about $35 billion in annual revenue, in Baltimore federal court for selling HeLa cells without approval from or payment to the family. Lacks and Lacks-Whye stated during the discussion that they are not involved with the lawsuit, and that members of the large Lacks family have varying perspectives on how to carry on Henrietta’s legacy.
Despite the systemic injustices that the Lacks family has experienced on behalf of the biomedical industry that continues to profit from HeLa cells without compensating the family, Lacks and Lacks-Whye choose to retain a positive outlook about how Henrietta’s cells are helping people.
“Henrietta was here for a reason,” said Shirley. “I believe … Henrietta was born to save mankind.”
“We try to look at the positive side of how she is helping so many people … millions of people worldwide,” said Lacks-Whye. “She is the one who was chosen to save millions of lives.”
Skloot said during her writing workshop that she is currently working on a book about the murky ethics and reality of animal research, especially pertinent because the workshop took place in a building where animal research actively takes place. To some students at Swarthmore, the insight of the Lacks family members and Skloot highlighted a lack of ethical awareness in biological sciences that permeates not only the biomedical industry, but also curricula at colleges like Swarthmore which claim to have progressive ethical stances.
Camryn Slosky ’22, a pre-med student majoring in neuroscience, spoke in an interview with The Phoenix about her dissatisfaction with the bioethics curriculum at Swarthmore.
“I think it is such a complicated issue that professors and students alike are wary of talking about it, because they’re worried that their specific stance is not correct, or will rub someone the wrong way,” she said. “I think it’s a really important conversation and discussion to have … because especially with biological sciences, you are oftentimes interacting with living organisms.”
Slosky emphasized that it is so important to highlight stories like Henrietta’s because the Lacks family’s story is not an isolated incident of researchers flouting bioethics for scientific clout.
“This is not the first time this type of stuff has happened and it continues to happen. In the current time period, oftentimes scientists will be like, ‘Well, that was in the past. We’re past that now. And we know more now.’ But we really don’t. We’ve made some strides, but not many.”
Student discussion moderator Nina Robinson approached the topic of the events from a different perspective, being a gender studies and medical anthropology prospective major with a minor in biology. She said that while the anthropology department’s curriculum on bioethics and informed consent is thorough and engaging, she has yet to see that type of engagement with ethics from the biology department.
“It’s not that [a lot of biology professors are] not trained to think about medical ethics, or other related subjects,” she said. “It’s just not in their mind. But I don’t think they can change the curriculum to head into medical ethics, because it gets away from the point of biology. So then I guess you have this sort of philosophical debate about the role of ‘hard sciences.’”
Robinson also spoke to the importance of S.T.E.M. professors acknowledging that even “hard” physical sciences can evolve to change our fundamental understandings of the world.
“I think Amy Vollmer does a good job of acknowledging that what we think is true about the world can change at any time. … When you’re any kind of professor, you have to be able to acknowledge that what you’re teaching is an opinion. And I think that it’s really hard to do that when you’re teaching a class where you’re like, ‘This is the way the cell cycle works.’”
Carone said that one of her main takeaways from the Cooper Series events was seeing how the Lacks family uses Henrietta’s story to educate others about bioethics and medical autonomy.
“I was really just blown away with how that pride [about HeLa cells] was exuded in the Lacks family members … and how much they really wanted us to continue this story so that people know about Henrietta Lacks,” she said. “Because there have been some major violations of that family’s privacy, but they’re using this as a way to educate others so that it doesn’t happen again in the future.”
Robinson said that the way the Lacks family was so down to earth in spite of their immense social responsibility as Henrietta’s descendants and very public advocates for medical autonomy stood out to her.
“They’re definitely in a very unique position of social power where it was sort of inherited, and they also come from a family that has no social power,” she said. “They are regular people. They’re not professors. They’re not medical professionals. They are mothers, and daughters, and they are just trying to help people.”
The discussions with Skloot and the Lacks family members have renewed Carone’s interest in teaching the story of Henrietta Lacks as part of Swarthmore’s genetics curriculum.
“I think that every year that I’ve taught genetics … I increase the amount of discussion and the focus that we have on HeLa cells, and I think that this has only renewed my interest in doing that, but also made me think about maybe new ways that we can … bring in a little bit more of the human aspect.”
