Henrietta Lacks - Exploiting Minorities for Medical Research (from Lauren's Blog)
Last edited Thu Aug 3, 2023, 08:37 PM - Edit history (1)
Earlier this week, the family of Henrietta Lacks settled a case with ThermoFisher over the use of special cells, HeLa cells, taken from Lacks’ cervix during a routine biopsy when she was being treated for cancer. When I first heard this story, one of the things that concerned me was the idea that taking Lacks’ cancer cells without consent was unethical, given that it was done for her benefit. I could see that SELLING the cells was unethical for financial reasons, but the idea that studying the cells without Lacks’ consent was wrong challenged my understanding of medicine.
Removing cancer cells with a biopsy and studying them in the effort of understanding the cancer and trying to treat it is a practice that has been going on since the 1870’s in persons of all races, and it is only recently that individuals have been asked to consent with this practice. I recently had a biopsy to exclude the possibly of cancerous lymph nodes, and I was begging for one. Not performing a biopsy to check for cancer is considered negligence.
However, when the HeLa cells were studied, it was found that they reproduced within 24 hours. And this was a medical miracle. Should Lacks have been told then? Would she have understood? Would she have been asked if her cells could be used for research? Would she have been asked every time a medical researcher used her cells to expand medical knowledge and develop cures for major illnesses? The idea that it was unethical to use the cells without the Lacks’ consent or subsequently the consent of her family was a problem that really bothered me, because I was alarmed at the possibility that the family would say no, and critical research would be halted.
Henrietta Lacks’ cervical cancer HeLa cells are amazing. They are called “immortal” because of how fast they reproduce. HeLa cells have been reproducing since 1951, when they were originally removed from Lacks’ cervix and they have been used in the treatment of cancer and Parkinson’s disease, in the development of polio vaccines… and even in the development of the COVID vaccine. The cells are crucial for medical research, and I would hate to see Lacks’ family - non-researchers - arbitrarily choose who could use them.
BUT! The fact that the cells were SOLD makes all the difference in the world. A vial of HeLa cells goes for $650 in today’s market. Because they reproduce every 24 hours, hundreds of thousands of vials have been sold since 1951. For any company to make a profit from the HeLa cells without compensating the family is wrong.
The idea that experimentation on African-Americans without their consent is a horrific injustice is most famous in the “Tuskegee Syphilis Study”. For 40 years, 600 black men with Syphilis were left untreated in order to study the disease. They were lied to and told that they were being treated when in fact they were receiving placebos. 128 men died, 40 wives were infected, and 19 children were born with congenital Syphilis. The study was begun in 1932 and ended in 1972 when it was decided that the study was unethical. The effects of the study still harm the families involved today, and while they were “compensated”, it cannot undo the damage.
Less well-known but equally horrific was Dr. J. Marion Sims’ use of slave women in the 1840’s to develop gynecological treatments associated with the complications of protracted childbirth… performing surgery on the enslaved women while they were bound to surgical tables and operated on while drugged with opium instead of anesthesia. They endured horrific pain and some became addicted. Sims was later hailed as Father of Modern Gynecology and became president of the American Medical Association. He claimed that the slaves were willing.
In the 1950’s for a span of 20 years, black inmates in a Philadelphia prison were paid a few dollars and used as research subjects for everything from pharmaceuticals and personal hygiene products such as facial creams and skin moisturizers to perfumes, detergents and anti-rash treatments. The purpose of the treatments was to make sure that these products did not harm consumers. One of the main experimenters was Albert Kligman, considered a pioneer in modern dermatology. Many of the men were burned and disfigured by the experiments. Additional experiments were done on the men with lethal substances such as radioactive isotopes, viruses, fungus, asbestos, LSD and chemical warfare agents.
Even in the 1990’s, medical experimentation continued. In New York, 34 black and Hispanic boys aged 6-11, the younger brothers of juvenile delinquents, were given small doses of fen-Phen (Fenfluramine) to test a theory that violent behavior could be predicted by brain chemicals. Their mothers, thought to engage in what was considered “adverse rearing practices” were given $125. Fen-Phen was popular in the 1990’s as a weight loss drug and was also thought to cure neurological disorders. Was there permanent damage? Too soon to tell. It was taken off the market in 1997 from concerns that it led to heart disease.
Where is the line drawn between advancement of scientific and medical knowledge and exploitation of minorities, inmates and the poor? Today, individuals are “compensated” and give consent. But do they really know the risks? Are the risks even known when the experiment is conducted? Are the risks buried in fine print? I don’t have answers. I think the individuals used in studies should be verbally counseled on potential risks, should have the right to sue in cases of permanent harm and should have the right to life-long free medical treatment. But I don’t know what can be done in the case of experiments on children in which poor parents are willing to risk their child’s health for a few dollars.
I am happy that Lacks’ family is getting compensated for the sale of HeLa cells. In my mind, use of the cells was a win-win. No harm was done to Lacks by harvesting the cells and at the same time, amazing research came of it. But to be honest, while PETA would be mad, I would rather have animals tested than poor or imprisoned human beings. In fact, I think it is terrible to think that disadvantaged human beings are experimented on in order to save animals. What I really wish would be that it is possible to conduct experiments on dead bodies and donated organs and leave the living alone. Maybe in time. I’m sure the means could be developed to conduct experiments without using disadvantaged human beings if it was given enough priority.
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