The Unforgivable Immortality of Henrietta Lack: Racism Speaks of a Revisiting of Tuskegee
She was a black woman being treated for cervical cancer by white male doctors. Her cervical cells were biopsied and stored without her knowledge and consent when she came to these physicians for treatment. Within months after her “treatment,” Ms. Henrietta Lacks died. Ms. Lacks cells have since been used by medical professionals around the world as a heralding of stem cell treatment, replicated, dispersed and used, literally all over the world without her consent, or that of her family. Does it matter that cervical cancer cells were taken from a black woman by white medical professionals in 1951, without her consent, used without her consent and continue to be used without her consent, or that of her family? The science publication, Nature, just ran an article about the lives saved by these cells, and while it mentioned the fact that Ms. Lacks never gave consent, it lauded the information gained from the cells, purported that this knowledge served humanity, and in my opinion, in it’s own way, Nature, contributed to the abuse of Ms. Lacks original unintended submission to the field of science. Ms. Lack’s family has most recently reached an agreement with groups in the United States to form a board to grant permission for researchers to use the cells, cells with have been negligently passed around the scientific community for a price that never reached the Lacks family; according to the scientists using the cells, that information contained in the cells and their replication belonged to the scientists, not Ms. Lacks or her family. The family has not made any money off the cells that have benefited the entire world.
This makes me think of the Tuskegee project, and for those of you who are uninitiated into the world of medical racism, let me suffice to explain that the white medical establishment used black men as lab specimens,withholding treatment to sick men to see how many survived without appropriate treatment. The project was heralded, between 1932 and 1972 as groundbreaking. When one looks up Tuskegee on Wikipedia, for instance, a glowing report emerges about how black men were allowed to be fighter pilots, finally!. What lies beneath this report? Well, you have to type in “Tuskegee Syphilis Experiment” in order to get the full report, that these storied men were subjected to horrific medical experiments, and denied known treatment to syphilis all so “researchers” (read: white male governmental officials and physicians) could watch the progression of the disease until the men died from it. Were these men ever told they were research subjects? NO.
So, doesn’t it seem strange that Ms. Henrietta Lacks, a black woman being treated by white male physicians, in the same era as the Tuskegee Project was subjected to becoming a lab specimen through her cervical cells? That parts of this woman’s vagina were literally taken from this black woman’s body for use without her consent by the white medical establishment that still lauds the use of these cells as reasonable for medical endeavors because she was an unknowing specimen who “contributed” to scientific discovery? Gosh, sounds a lot like a form of scientific rape to me!
No matter how much Ms. Lacks’ cells have contributed to the field of science, and I don’t deny they have, Huff Post has a summation below, it was still done without here consent, or her family’s consent:
Cells from that biopsy became the first to successfully replicate continuously in culture (and hence be called immortal), and have since played a crucial role in many scientific breakthroughs. Researchers sent them into space to study the effects of zero gravity, and used them to develop the polio vaccine, for example. The cells are named in more than 70,000 research papers.
Lacks’ cancer killed her not long after the biopsy, but the problems didn’t end. Her family remained unaware of her immortal cells until 20 years later, when scientists began using her children in research without their knowledge, Skloot reported. Later, their medical records were released and published without consent.
In Nature, Collins and Hudson pointed out that the genome of HeLa cells is not identical to Lacks’ original genome. The cells carry the changes that made them cancerous, and have undergone further changes over the time they have spent in cell cultures.
Even so, they said, the sequences carry information with implications for her descendants.
The new NIH plan does not have the weight of law; although the organization funds most medical research in the U.S., researchers funded by other entities remain free to sequence HeLa cells and post the information anywhere.
“However, we urge the research community to act responsibly and honor the family’s wishes,” Collins and Hudson said.
A paper discussing the sequencing of a second line of HeLa cells appears in the same issue of Nature. It is the first paper to be published under the new NIH policy on use of HeLa genomic data.
A growing concern
Although the Lacks family’s situation is exceptional, privacy is a major concern for genomics. As a rule, science benefits from the easy exchange of information, and results of sequencing projects are often posted in open-access databases.
While donors’ identities are not included, Web sleuthing can sometimes find them, as one researcher reported in the Jan. 18 issue of the journal Science.
Under current U.S. research rules, samples taken in the course of a person’s medical care may be used in research without the person’s awareness or explicit consent if the information is recorded without identifying information.
“The problem is that absolute anonymity cannot be guaranteed in light of current knowledge and technology. Officials are considering whether to propose a change in the current rule,” Dresser said. “In surveys, focus groups, and interviews, many would-be research contributors say they want the power to consent to research uses of their samples.”
How would informed consent of that work anyway: “By the way, Ma/am, we know you’re dying ,but can we get some of those cells out of your vagina to send them space so we can watch them, use them for hundreds of projects, send them around the world with your name attached for use for which you won’t be paid and make sure we develop a vaccine from them so no one will want to shoot us in the process?”
Notice how no one talks about the moral outrage of taking cells from a woman’s vagina and using them without her consent. No one is shouting about how unethical this practice was and continues to be. It’s like an ex post facto justification for taking a woman’s vaginal body part without her permission and justifying how many people it helped. That’s not really giving permission; that’s like saying “she asked for it,” and I hate the way that no one talks about this woman’s rights. Now Ms. Lacks’ family is talking about how they don’t want to be identified by this genetic information, but no one talks about the injustice of using human beings from a racial minority as lab experiments without consent or protection, as if they were little more than rats to be euthanized at the end of their usefulness. In fact, I have just seen articles coming about about the most “humane” ways to kill lab rats: is it better to “manually terminate” (a.k.a. break their necks by hand with “cervical dislocation”), to “use co2” which means flooding them with carbon dioxide (which researchers have discovered might be inhumane because rats normally avoid this co2 that kills them and therefore might have prior knowledge of their death leading to suffering), or opiod injections (ruled out as inhumane). In light of these articles published coincidentally with articles about how humans have been unwittingly used in fatal medical research projects, or sent around the world as research projects, how can there even be an honest discussion fo ethics in a field seeming to lack those to begin with. How does one even teach ethics to a field used to plundering and seemingly incapable of understanding the word?
By the way, Ms. Lacks didn’t have a happy ending getting “medical treatment” for cervical cancer; she died from it, even though her cells continue to live on in the field of medical research.