Skloot writes on page 31, "Henrietta signed a consent form that said, 'I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anesthetic either local or general that they may deem necessary in the proper surgical care and treatment (blank).' " After signing this, did Henrietta give consent for the medical team to do what was done to her? In regards to this, what rights do you think her family should have now? Why? 

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There is little argument that the cells harvested from Henrietta Lacks, known in research as the HeLa cell line, paved the way for lifesaving biomedical and pharmaceutical discoveries. The question of whether these cells were harvested ethically, however, is much more nuanced.

Henrietta Lacks was a poor Southern black woman...

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There is little argument that the cells harvested from Henrietta Lacks, known in research as the HeLa cell line, paved the way for lifesaving biomedical and pharmaceutical discoveries. The question of whether these cells were harvested ethically, however, is much more nuanced.

Henrietta Lacks was a poor Southern black woman receiving medical care in the segregated public wards of Johns Hopkins Hospital in Baltimore in the 1950s. She was treated at a public research hospital less than a decade after the Nuremberg Code (1947) established international standards for ethics in medicine and decades before the National Research Act (1974) and the Belmont Report (1979) established ethical standards for medical research in the United States. As Skloot writes:

Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment. And as Howard Jones once wrote, “Hopkins, with its large indigent black population, had no dearth of clinical material.”

It was status quo for researchers, like George Gey, to use tissues from patients like Henrietta. Henrietta consented to treatment when she signed an informed consent form that said, “I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anesthetic either local or general that they may deem necessary in the proper surgical care and treatment.” During treatment, her doctors performed a standard biopsy and discovered that Henrietta’s cancerous cervical cells were highly unusual: “Henrietta’s were different: they reproduced an entire generation every twenty-four hours, and they never stopped. They became the first immortal human cells ever grown in a laboratory.” After Henrietta’s death, Gey kept her cells and, recognizing the potential medical value of these cells, openly shared them with biomedical researchers and research organizations.

The ethical dilemma here is whether Henrietta’s consent extends to tissues that were removed from her body during standard treatment. According to Skloot, there are anecdotal accounts of that Henrietta orally consented to the use of her cells:

[George Gey] leaned over Henrietta’s bed and said, “Your cells will make you immortal.” He told Henrietta her cells would help save the lives of countless people and she smiled. She told him she was glad her pain would come to some good for someone.

This anecdote could, theoretically, be used to demonstrate consent. However, there is no real proof that this encounter between Gey and Henrietta ever happened. It is important to note that are no records that Gey ever visited Henrietta. The fact of the matter is that in 1951, there was no legal or social obligation for Gey to document or even inform Henrietta or her family about the use of her cells in research.

While ethical guidelines like those established in the Belmont Report (1979) now require more stringent protocols for informed consent, once tissues are removed from the body, their ownership typically changes. Barring specific patient-driven requests, the ownership of medical or surgical “waste” usually passes to the institution. When it comes to this type of waste, legal precedent in the United States has historically sided against patients. The case of Moore versus Regents of University of California (1990) is mentioned in The Immortal Life of Henrietta Lacks. John Moore, a white man, was treated by doctors at UCLA for hairy-cell leukemia in the 1970s and 1980s. Researchers at UCLA discovered that Moore’s cells, known as Mo, had incredible potential in biomedical research and patented them. Moore signed a consent form allowing for the use of his cells but eventually sued UCLA for property rights to the DNA the researchers patented. The courts ruled against Moore, stating that he had no claim to any profits or patents derived from his cells.

The Moore versus Regents of University of California ruling sets legal precedent for cases of tissue ownership in the US. Ironically, the 1990 court factored the fact that the Lacks family never sued Johns Hopkins into their decision, assuming that the Lacks family were financially able to bankroll a lawsuit or even aware of their rights to sue. In 2018, however, the Lacks family did exercise their right to sue for ownership. It is now up to the courts to decide.

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This is a tough question, because times and laws have changed greatly since Henrietta Lacks's cells were harvested in 1951.

According to the law, the doctors didn't need Henrietta's permission to use her cells after her death, but in my personal opinion, the form that you quoted did not grant them the rights to do so anyway. That form only pertains to what happens during surgery, not after. It gives doctors permission to "perform any operative procedures and under any anesthetic either local or general that they may deem necessary in the proper surgical care and treatment." This form only gives them permission to do what is "necessary" to provide proper surgical care and treatment, and extracting her cells for later use (outside of Henrietta's own health care) is not a necessary part of the surgical process.

However, we cannot exactly hold the people of 1951 to the same laws as our time, so it would be difficult for Henrietta's family to be given a retroactive opportunity to claim any sort of compensation for this, or to prove whether or not this is something Henrietta would have wanted. In my opinion, the crux of this issue is more an ethical issue than a legal one, but it seems as though Henrietta and her family should have had some say in the matter—or at least known about it beforehand.

To play the devil's advocate, though, how do we know that Henrietta would have wanted the money earned from the use of her cells to go to her family? The fact is, we just don't know, and we don't have the legal documents necessary to change anything. However, researchers are now working to make Henrietta's family a higher priority, so it is possible that some sort of compromise in terms of familial rights can be reached.

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The amazing and important movements in science, can almost always, be traced back to Henrietta Lacks. Her cells have paved the way for tremendous improvements in the medical care we receive today, however there are so many questions that have been raised about ethics and the way the cells were taken. Henrietta did sign the paper mentioned above, and during that time in history, the paper was a kind of consent form. During the 1950's a consent form for harvesting cells, or whatever else, was not needed. It was not against the law for them to take her cells, however as an ethical question, it has become a much broader problem.

Henrietta was a poor black woman, whose cells have lived on, long after her death. Her cells, known as HeLa, have helped science and us in many ways. It was used in the making of the vaccine for polio and many other scientific finds. The biggest issue is the ethical question. Was it ethical for the doctors to sell parts of her cells? Her family didn't know anything about it, and this raises another question. Where do we draw the line? How far is too far in the name of science? Yes, we owe so much to the study of Henrietta's cells, and yes, there have been major breakthroughs in how we can treat and fight these terrible diseases, but is it ethical? 

The pharmaceutical companies have made a fortune with the outcome of this study, while Henrietta's family continued to live in the poorest of conditions. Her family couldn't even afford their own health insurance, but the big companies were getting richer and richer. So in answer to your question, yes Henrietta did give a form of consent by signing the paper, but again, consent was not made back then. It was legal for the doctor's to remove and study her cells, however, what was done to her family was not right. In 2013 the family was given some control over access to the codes for HeLa, but the family is still not in control. The problem with all of this, to me, is that what was done with the cells, wasn't ethical. If the family had been able to make the decision, then we could look at this differently, but they weren't given the opportunity to do this, so the ethical question is still very much alive, just like Henrietta's cells. Henrietta's family should have received something from the sale of her cells, after all it is their family history.

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