“It’s a Way of Reparations”: Why Henrietta Lacks Settlement Matters for Bioethics & Racial Justice
Written by GRB on 08/08/2023
This is a rush transcript. Copy may not be in its final form.
AMY GOODMAN: I want to turn right now to a story you know well. The family of Henrietta Lacks, a prominent — a Black cancer patient whose cells were taken by Johns Hopkins University Hospital without her consent in 1951, has reached a settlement over the unethical use of her cells with pharmaceutical company Thermo Fisher Scientific. Henrietta Lacks’ family has denounced the racist medical system that allowed the biotech company to make billions in profit from the “HeLa” cell line — “HeLa,” Henrietta Lacks — which helped produce remedies for multiple diseases, including the first polio vaccine. Details of the settlement were not made public, but the plaintiffs celebrated the lawsuit’s resolution last Tuesday, on Henrietta Lacks’s birthday. This is her grandson, Alfred Lacks.
ALFRED LACKS CARTER JR.: Our family member, our loved one, Henrietta Lacks, 103 years old today. And it’s been said today, it couldn’t have been a more fitting day for her to have justice, for her family to have relief. … It was a long fight. It was a long fight, over 70 years. And Henrietta Lacks gets her day.
AMY GOODMAN: The Lacks family announced its lawsuit in 2021, 70 years to the day after Henrietta Lacks died. This is her granddaughter, Kimberly Lacks, speaking alongside attorney Ben Crump in 2021.
KIMBERLY LACKS: I think about my grandmother, as I said before, laying in that hospital room and how they came in there when she had radiation going through her body, in horrific pain, but all they were concerned about was taking cell tissues from her body. That’s terrible.
BENJAMIN CRUMP: Terrible.
KIMBERLY LACKS: And then, on top of that, no one in the family had any idea. They acted like she was alone. They didn’t reach out to her husband, her aunt, her cousins — anyone — to let them know what was taking place. That’s disgraceful. And that definitely is racism, in my opinion. We was treated — the family was treated, she was treated horribly.
My father, one thing I can say about him is he’s a sweet man. And he always said that “Who wouldn’t want a pocket full of money? Anybody, everybody wants money. But it’s a bigger picture.” But he did say to me — and he’s sickly, but he was very happy and excited to know that we’re finally going to get justice, finally going to get justice for Henrietta Lacks, for his mother.
AMY GOODMAN: The Thermo Fisher settlement could now lead other companies to examine how they’re profiting from biological specimens and ask how ethically their samples were collected. In 2010, the publication of journalist Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, pushed many institutions to address their role in exploiting Lacks, including the National Institutes of Health, or NIH, which is the largest public funder of biomedical research. The NIH opened a dialogue with the Lacks family, which led to a HeLa cell working group to improve transparency by reviewing proposals for projects that use the full DNA sequence of cells.
Still with us, Dorothy Roberts, director of the University of Pennsylvania Program on Race, Science and Society, who’s followed this case closely. In 2014, she gave the Henrietta Lacks Memorial Lecture, interestingly, at the Johns Hopkins Institute for Clinical and Translational Research.
Professor Roberts, talk about the significance. We don’t know how much the settlement is, but the significance of the contribution Henrietta Lacks made, perhaps unknowingly, to global science and medicine, and the number of people she helped?
DOROTHY ROBERTS: Yes. I like the way her granddaughter said there’s a bigger picture to this. This settlement is long-overdue compensation to the descendants of Henrietta Lacks, not only for taking her cells without her consent and knowledge, but also compensation for the really immeasurable medical advances her cells have given humanity and that multiple biotech companies, including the one that settled with the Lacks family, have reaped in profits from those advances. And so, to me, this settlement represents a broader message that the Lacks family’s fight, for decades, for racial justice in science and medicine sends to us. It’s a form of reparations, I think, for all of us, for the way in which biomedical science has used Black people’s bodies for centuries in experimentation without consent, without benefit, direct benefit, to the people who contributed to the science, although it’s benefited millions and millions of people. Maybe everyone in this nation, certainly, and then globally, has benefited in some way from these remarkable cells, that multiply endlessly and can be used in multiple ways, and have been used by science for the development of the polio vaccine, the COVID vaccine, HPV vaccine. The cells went up in space to see what the effect of weightlessness would be on them. They’ve contributed to in vitro fertilization. I could go on and on. They are absolutely irreplaceable and remarkable and immeasurable in what they’ve contributed.
And I want to emphasize, though, what the Lacks family’s fight for compensation and for justice means more broadly, because I think it’s important to understand that what happened to Henrietta Lacks didn’t just happen to her. It’s part of a long history of experimentation and exploitation of Black people in biomedical research. And that has been grounded on a racist myth of Black biological difference. This is a myth that human beings are naturally divided into biologically distinct races. And that was invented by Western scientists in order to justify enslaving Black people and experimenting on Black people’s bodies. And Henrietta Lacks’s story itself refutes this ideology, which has underlied so much of biomedical research in the United States, this idea that Black bodies are different innately, and, in fact, inferior, and therefore need to be enslaved or need to be regulated and can be used for experimentation because they’re so innately distinct. But yet, her cells have been used to benefit all of humanity. So her story itself refutes this really toxic, damaging, horrible underlying racist ideology that has [inaudible] much of science in the United States and [inaudible], you know, in particular, biomedical research.
And then there’s other implications, as well, not just for acquiring consent. I mean, the Lacks family got a settlement earlier with the National Institutes of Health, an agreement that they could have more control over how Henrietta Lacks’s cells were used. And so, it raises these questions about how scientists today continue to take parts of people’s bodies, including their cells, without informed consent. And also, it raises issues about access to healthcare, the benefits of scientific research, where so often scientists go into Black communities to use Black patients, incarcerated people, children in foster care for their studies, without engaging the communities in the design of the research or giving back to the people who live there. And all of this is part of the fight that the Lacks family has been waging for justice. And I just think it’s a wonderful way that they have given all of us, through Henrietta Lacks’s cells but also through their fight for justice, to examine these deep issues of racism, this deep legacy of racism, in biomedical research and science, more broadly.