On October 4, 1957, a 30 year old black woman died from cervical cancer. Her name was Henrietta Lacks. Henrietta signed a consent form to operate but not to have her tissues removed. Unbeknownst to her family, Henrietta’s cells would live on to become famous, as well as to assist with many medical advances. The Lacks family would not discover this until 20 years later. Rebecca Skhoot’s book The Immortal Life of Henrietta Lacks discusses the question of ethics involved in allegations that were made but never rectified. The main points discussed in Skloot’s book are the treatment of blacks in the 50s by doctors and hospitals, patient consent, the family’s lack of knowledge, and donor rights. The book leaves the reader to ponder if Henrietta and her family were treated ethically.
The first ethical point is the treatment of blacks in the 1950. Segregation was the law when Henrietta was a patient in John Hopkins Hospital. Black patients had almost no rights and were still considered unequal to whites. Doctors and researchers believed they had the authority make decisions concerning how their patients were treated medically. In the times in which Henrietta Lacks lived, consent for medical practices did not exist. Most of the Negro patients could not read or write. Most would not have known what they were agreeing to or signing, as far as that goes. The doctors did not seem to care as long as they got a signature. As stated by Kate Partynski from the University of San Diego, today donors believe they have a right to know how their tissues are being used. The Lacks family believes they should not only get royalties, but a voice in how Henrietta’s cells are used.
“ Like many doctors of his era, TeLinde often used patients from the public wards for research, usually without their knowledge” states Rebecca Skloot in The Immortal Life of Henrietta Lacks. Many scientists believed that since patients were treated free in public wards, it was fair to use them as research subjects as a form of payment.” Whites had more money, so they could afford health care, whereas the blacks were poor. Researchers took advantage of that and used them as guinea pigs in whatever research they were conducting at that time as a form of payment for services rendered.
There have been many instances where studies were done on a person’s tissues or bodily fluids without the patient’s knowledge, but it was not made a matter of contention until the HELA cells became a controversial issue. “But first—though no one had told Henrietta that TeLinde was collecting samples or asked if she wanted to be a donor—Wherton picked up a sharp knife and shaved two dime-sized pieces of tissue from Henrietta’s cervix: one from her tumor, and one from her healthy cervical tissue nearby. Then he placed the samples in a glass dish,” Rebecca Skloot says of Henrietta’s unknown donorship.
She was not alone. In the years between 1932 and 1972, 300 black Tuskegee airmen were experimented on for a disease that knew nothing about, syphilis. The doctors had no intention of curing it. Approximately 200 died from these experiments.
Modern thought on informed consent regarding cell reproduction has changed since Henrietta’s time. Then, common people were constantly being utilized in experiments without their knowledge. Analysts were in the dark about microorganism operations—they never knew that in the future those cells would bring in millions of dollars, that in the future examiners could inspect DNA and increase knowledge about patients and their ancestors. The abuse was unintentional and the practice honorable according to guidelines in that time period.
George Guy, the researcher who cultivated the original microorganism, was committed to remedying cancer. He used some of his own tissue and that of his offspring. He never tried to make a profit from the cells nor from the medical equipment he invented that is still used today. Without money to support his research, Guy furnished his own workshop.
Removing cells from the sick was common in the 1950s. It is today as well, according to Ari Schulman in “What’s A Body Worth?”
But other experiments weren’t so benign. Another example of ethical questionability is the story of Henrietta’s third child, who was placed in a hospital for the insane. While a patient there, experiments were done without the family’s or patient’s permission. One such experiment was drilling holes into the skull, draining fluids and pumping air into the brain.
In reference to The Immortal life if Henrietta Lacks, McKie of “The Observer” states in an online article that now society is considering new health laws, people should take another look at the Lacks story. It is said that one of Mrs. Lacks’ sons asked, “If our Mother is so important to science, why can’t we get health insurance?”
Henrietta Lacks, a middle aged black women in the 50’s, died of cervical cancer while her daughter Deborah yearned to learn about the mother she never knew. Deborah was just a small child when Henrietta died, and all she had was a child’s memory of her mother. Deborah and author Rebecca Skloot take the reader on a heart wrenching journey to learn about Henrietta and her infamous HeLa cells.
Lisa Margonelli’s purpose in her review for the Sunday Book Review in the New York Times is to inform readers of Henretta Lacks and her family’s journey to find closure over the injustice done to the Lacks family in regard to lack of patents’ rights. She describes the way Henrietta and her family lived in poverty and after Henrietta died, the way her cells were used and how the family became informed of it. Margonelli describes how Skloot and Deborah traveled to Clover, VA to see the Lacks “homeplace.” She talk about Deborah’s hives and anxiety and her medical issues caused by family and lack of knowledge about what was done with her mother’s cells until approximately 20 years later when they were asked to give blood samples in hopes of finding more valuable cells. Even then, the Lack family believed they were being tested to see if anyone else in their family had cancer. Despite the good intention of the researchers, Henrietta’s family never profited from their mother’s contribution to medical science. While Deborah’s medical conditions weren’t treated because she had no insurance to defray the cost of expensive medicines, researchers eventually made billions on Henrietta’s cells.
Informed consent was not practiced until many years after Henrietta had died. If it had been, things may have turned out different for not only Henrietta, but many other patients as well.
Rebecca Skloot explains how it came about. The term informed consent first appeared in a court document in 1957, in a civil court ruling on the case of a patient named Martin Salgo, He went under anesthesia for what he thought was a routine procedure and woke up permantly paralyzed from the waist down. The doctor hadn’t told him the procedure carried any risks at all. The judge ruled against the doctor, saying, “A physician violates his duty to his patients and subjects himself to liability if he withholds any facts which are necessary to form the basis of an intelligent consent by the patient to the proposed treatment.” He wrote that there needed to be “full disclosure of fact necessary to an informed consent.”
The research populace has not hidden facts and has been forthcoming in regards to HeLa information. Society believed that researchers were omitting facts, but that wasn’t true. Researchers are happy the information is available and it’s being talked about.
This story seemed to have given a fresh spin on the topics it discusses causing substantial curiosity- maybe because topics of logical concepts are more yielding. While Skloot lets readers make up their own minds about the outcome, she makes the reader consider it in terms of widespread ethical implications. Its powerful suggestion is not only the wider genetic and social and ethical inquests, but the way her case was handled. Mrs. Lacks and her heirs should have been told what the physicians were doing, gotten their permission, and remunerated them in some way. If there are doubts, it is mostly concerning how things could have been done differently.
In regard to a tissue donor’s rights, ethically and financially, there were none whatsoever. Times have changed drastically since then. Today donors have a say in how their bodies are treated by medical and research personnel. Financially, no one profits from the research but the scientific genre, although medically, many polio patients as well as patients with other ailments profit from the research. No one has ever been compensated financially. Some feel the satisfaction of being instrumental in finding a cure for a baffling disease or virus is enough, but not all feel that way
Rebecca Skloot talks about the financial question of profiting from cell research: Moore was not awarded any of the profits, but the judge did agree with him on two counts: lack of informed consent, because Golde hadn’t disclosed his financial interests, and breach of fiduciary duty, meaning Golde had taken advantage of his position as doctor and violated patient trust. The court said researchers should disclose financial interests in patient tissues, though no law required it. It also pointed out the lack of regulation and patient protections in tissue research, and called on legislators to remedy the situation. But it said that ruling in Moore’s favor might “destroy the economic incentive to conduct important medical research,” and that giving patients property rights in their tissues might “hinder research by restricting access to the necessary raw materials,” creating a field where “with every cell sample a researcher purchases a ticket in a litigation lottery.”
In “Donors Retain No Rights to Donated Tissue” by Kristin E. Schleiter, JD, LLM, she describes autonomy as persons being able to make their own medical decisions as well as donating tissues for research and participating in clinical research. She goes on to explain the legal aspects of tissue donation. There are court applications filed for approximately 20 percent of human genes. Several court cases have been challenged. The purpose of this article is to inform the reader of the legal aspects of tissue donation and the patient’s rights concerning said tissues.
The answers to the questions were clearly answered in this article. In the past, researchers believed they retain the rights to do anything they wanted with a person’s tissues. It has never been established by law who owns the tissues. The AMA does not allow the use of tissue for commercial purposes without the patient’s knowledge. This article was written for any layperson wishing to gain knowledge concerning tissue donation and patient rights involving the tissues. It is a very informative on the subject of the process and rights of donating tissue for medical study. It addressed the pros and cons of donor rights when tissues are being taken for research. The questions that were asked in the introduction of this paper were clearly addressed, and the author was well informed.
In the era that Henrietta Lacks lived, the black population was poor and illiterate. Johns Hopkins unintentionally took advantage of Henrietta and her family. Henrietta did consent to surgery, but not to have her tissues analyzed. Henrietta’s family was kept in the dark for 20 years about her donation to science. They never received any compensation. The laws have changed somewhat in regard to tissue donation, but it is too late for Henrietta Lacks and her family.
Since then, The Henrietta Lacks Foundation has been established to assist the Lacks family’s financial situation with educational costs, medical and dental needs and emergency assistance. The Lacks family has eventually come to terms with the significance that the HELA cells have made to science and are proud that they have helped to save so many lives. The question of ethics in this case has never really been defined or satisfied to the family’s satisfaction. The family has made peace in their hearts about their mother’s contribution to science, but not about the ethics involved. The morals and ethics of doctors and researchers have changed somewhat now, but there is still a lot of controversy about donor rights and cell contribution.
copyright © 2013
Margonelli, Lisa. “Sunday Book Review”. New York Times.5 February 2010.1-4
McKie, Robin. “Henrietta Lacks Cells were priceless, but her family couldn’t afford a hospital.”
The Observer (Saturday 3 April 2010).Web
Partynski, Kate. “Tissue Ownership in the Modern Age: What Henrietta’s Story Can Teach Us.”
University of San Diego (n.d) 4 pgs. Web.
Schleiter, Kristin,JD, LLM. “Donor Retain No Rights to Donated Tissue.” Virtual Mentor Volume 11, Number8: 621-625 (August 2009).Web
Schulman, Ari. “What’s A Body Worth?” The New Atlantis, Number 35 Spring 2012. Pp.99- 115.Web
Skloot, Rebecca.The Immortal Life of Henrietta Lacks.Crown Publishing Group, a division of Random House. New York.2011.Print
Skloot, Rebecca. FAQ . Web.www.rebecccaskloot.com
Teresa Robinson is a college student with a love of reading and writing.