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10 October 2011

The Immortal Life of Henrietta Lacks. Book Review

Rebecca Skloot began her book with the story of her obsession that was triggered by the biology lecture in the community college. The professor caught her attention with the story of “immortal” Hela Cells without mentioning their donor. It was 1988 and no one had a clue who was the real person behind them. In the next years she was trying to reconstruct the events of the past years painstakingly. The main problem was, no one knew anything, and there were no records or relevant information on the subject. To cast light on this secret, the author began to search for the Family members of Henrietta Lacks.

Henrietta Lacks was the tenth child in her big family. When her mother died, she was moved to the house of her grandfather together with her cousin David. When Henrietta found out she had cancer, a considerable amount of time had elapsed. She was in her thirties and a mother of five children. The only clinic providing medical aid for the non-white population was Hoskins hospital. It was a charity institution that cured poor and needy people. The hospital had the separate wing that serviced only for a “colored” population. Howard Jones was the first Doctor that tested her, but had not diagnosed anything serious. Three months later Henrietta had a tumor. Along with the story of Henrietta Lacks readers found out about the pioneers of cellular research, George and Margaret Gey. They were repeatedly trying to preserve human cells, but all were in vain until they obtained Henrietta’s cells.

Today, the things one knows as immoral or unethical were absolutely common in 30s and 40s, especially if it touched African-American population. Back in that time, they were called “colored” or “Negros” and were treated like inferiors. The fact that slavery was abolished had not influence the racist sentiment among the society. As to medical aid, this field was almost closed for them or performed very briefly. The fact that Henrietta’s cells were not donated or willingly presented, makes the actions of the researchers totally unethical.

In the next part of the book Rebecca Skloot described her first steps of contacting the Lacks family. She met the only African-American student of George Gey, Rolando Patillo who was organizing HeLa Cancer Control Symposium. He was the first person who connected the author to the Lacks family. Meanwhile, Henrietta’s disease history assumed an alarming character. With the time, the cancer was spreading all over her body. She resorted to her doctors repeatedly, but they were sending her home with the next medication. When she could barely walk and urinate, the doctors had found multiple tumors all over her internal organs. The disease moved from her cervix to the upper alvus and continued to grow one after one. She was exposed to the highest doses of radiation and given the most powerful analgesics together with morphine. Before Henrietta started x-ray therapy, no one warned her about the fertility loss. Jones diagnosed that her cancer was inoperable.

 Skloot presented several examples of gruesome medical experiments conducted on the African-American population during that time. The precedent known as the Tuskegee study had been revealed only in the 70s. During the research, African-American men were given shots of syphilis to learn how to treat the disease. The study of the same unethical value was Mississippi Appendectomies. The researchers performed unnecessary operations on poor African-American women in the sake of science. All these experiments were conducted without telling the patients about the details of research.

In those days, the doctors barely warned their patients about the consequences of such manipulations. Supposedly, they did not see anything unethical in such actions. The researchers often explained that they did not want to raise unnecessary panic among the patients. But the truth was in the fear of losing the required human objects for the manipulation and study. It was easy to perform experiments on the “colored” population as they were less important and mainly poor. The researchers were trampling ethics, morality and the basic human rights.

After Henrietta’s death, George Gey took the other tissues of her organs. He required the affirmation from her husband. When David Lacks refused, the researcher lied about the necessity of digesting the cancer among their children. After the death, Henrietta Lacks left five children, three sons and two daughters. Lawrence and Sony were the eldest brothers; Deborah and Joe were the smallest children. The one sibling that stood out the other Lacks was Elsie, mentally ill daughter of Henrietta Lacks. Elsie had been put into the mental institution. After Henrietta died, no one visited her. After the death of their mother, the eldest brother moved on with their lives, while the youngest children suffered from severe abuses from their aunt and uncle. As Henrietta’s sister hated her, she shifted the same feelings towards her children. They were always hungry, repeatedly beaten, and morally abused. The consequences of such childhood appeared at once. The youngest child, Joe grew up aggressive and dangerous. He went to prison for the killing, and afterwards he did not recover from abusive childhood. The hurtful story had happened to Deborah as well. She suffered from sexual harassment and abuse from her uncle. He chased her, beaten and touched, even after she moved to the house of her elder brother. As her mother, Deborah got married very early and gave birth to two children. Such exhausting life gave her anxiety, insomnia and fear attacks.

The doctors managed to steal Henrietta’s cells even after her death. While HeLa was spreading all over the world, helping to cure polio virus and giving profit to several cellular factories, the family were in need. No one took a moment to think about their destiny or at least, telling the story about Henrietta’s contribution to science. The most unethical issue in this story is the concealment of the facts by changing Henrietta’s name to Helen Lane. That fact led to several confusions in the future when the Lacks’ were trying to find out the information about their mother. However, it is important to admit the ethical side of this story. By hiding Henrietta’s name, the researchers preserved the privacy of the family from the intrusions.

The next part of the book investigates the ethical boundaries among the medical researchers. During the 60s the experiments on population continued. When several Nazi doctors were waiting for the tribunal in Nurnberg, the U.S. doctors decided to perform several studies on the prisoners. They decided to give HeLa cells shots for the prisoners who already had cancer. Back in the days, the prisoners were used as the test subject on the regular basis. Considered as the vulnerable population, they were exposed to various manipulations. Afterwards, the same experiment was conducted on the obvious patients. The Nurnberg Code did not function on the U.S. territory; the only way out was civil court. That triggered indignation within society and caused various trials. The situations like that led to several laws forbidding such practice without informing the patients.

The research of this kind can be easily compared to the Nazi’s experiments on Jews in the concentration camps. They exposed people to different diseases, performed different operations without anesthesia, sewing people together, etc. While the fascists’ doctors were judged by the tribunal, American scientists continued to experiment on, as they thought, the inferior race. After the forbiddance of experiments on human subjects, scientists were outraged and disappointed. This is the other example of actions performed avoiding the ethical issues. Even the fact of prisoners’ exploitation affects the whole notion of ethics. As one can see, the study moved easily to the manipulation with wide population. Only after serious legal cases, the practice of that kind was forbidden and the experiments called unethical.

At the time when HeLa cells became a very popular topic both in science, and among the wide audience, different journalists became interested in the Lacks’ family. Deborah was eager to know any information about her mother and the cells, but no one took the trouble to explain why her mother’s cells are used so freely. That is why HeLa cells were used without asking permission. Still, several scientists and even a facility sold HeLa cells and made a profit from them.

For the third time, the other scientists took advantage of their family. After several papers revealed the real identity of the HeLa cells, scientists decided to test the Lacks’ blood to compare their cells to their mother’s. As with Henrietta, they decided to lie by saying this blood is tested for cancer. Victor McKusick was the student of George Gey and his follower. Sending his helpmate doctor to perform the analysis, he obtained blood samples of the family members. Again, the family did not get any information on the tests. After the article in Rolling Stones described that Henrietta’s cells are sold 25$ per one, the family became furious. Demanding justice or even the simple information did not change the situation. No one paid much attention to the Lacks’ requests. The author depicted the similar story of Mike Rogers whose tissues were used for the sake of science without his permission. He sued his doctor for several years without any luck. But still it led to the several amendments in the law for protecting the patients.

Nowadays, patenting the cells is a common practice. Several cases alike to Rogers’ and Lacks’ helped to raise a bunch of serious ethical questions. Who has the right to control one’s cells? What are the boundaries of medical intrusion in the personal space? The scientists used the patients’ tissues and cells as they were their property. The logical explanation of such actions was the fact that the patients had been giving their tissues voluntarily. At the same time, the researchers were hiding the full information of the tests they were conducting, and the specimens they were preserving.

With the scientific progress, the roots of Henrietta’s disease were revealed. Human Papiloma Virus was detected. With the revealing the DNA molecule, the scientists were arguing how ethical is to alter human DNA. At the time BBC decided to shot a documentary about the Lacks’ family. Deborah was eager to know any information about her mother and the cells, but no one took the trouble to explain why her mother’s cells are used so freely. When Rebecca Skloot started asking questions about the family, no one responded. She spent several years to get closer to the Lacks family. It was a hard way to go with Deborah; the harder it was with the elder brothers. They got used to people cheating them and stealing the most precious that they had. Skloot spent much time on the phone to convince at least one of Henrietta’s children talk. At the end, the author won Deborah’s support and she enabled Rebecca talk to her brothers. Henrietta’s medical records were held secret, even from relatives. Rebecca Skloot took responsibility to show what impact Henrietta’s cells had on science and to make public her name.

One could observe the changing face of the science. Before conducting the experiments, the researches began to argue whether it is appropriate or not. The Lacks gained recognition which gave the family members an opportunity to find out more about their mother.  Though, it is difficult to read the family’s story and understand that their mother’s contribution to science was not voluntary. It is hard to understand the doctors could so easily benefit from the other person and after all, throw her out like unnecessary material. What is more disturbing, is realizing that any of the scientists came to the Lacks’ family to explain what their mother’s cells made for science.

Unlikely her brothers, Deborah had never been interested in making a profit from her mother’s cells. Instead of that, she passionately wanted knowledge about her mother. As Deborah was too small to remember Henrietta, she was interested in everything concerning her mother. A doctor in the Hoskins hospital, Christophe Lengauer, proposed the Lacks’ family to show the laboratory with HeLa cells, the way they worked and conducted experiments. Deborah, her younger brother Joe and Rebecca made a trip to the lab. At last, Henrietta’s children were treated with respect and recognition of their impact on science. Deborah was also invited with the speech in the symposium of National Foundation of Cancer Research. She was thrilled and happy as the only thing Deborah wanted is her mother’s name being praised.

Still, it was not the last shock for the Lack’s family and for readers as well. The story of Elsie Lacks revealed that she was exposed to the experiments on her body too. In the mental institution, that was severely overcrowded and poorly managed, the doctors performed their studies on patients. Despite the fact, that wards were poorly ventilated, the patients were not divided by sex which caused sex offenders and abuse. Without any external control, the doctors performed the experiments with the brains, like drilling a hole in the patients’ skulls or inserting metal blades inside the brains. These procedures were annihilated only in the 70s, when it was causing brain damage.

 As the first part of the narrative shows that the ethical awareness improved among the researchers. Showing the family of their mother’s contribution was the small step in brining peace for the Lacks’ family members. With the ability to address the wide public, the story of Henrietta Lacks made people around the world think about crossing the lines of ethical boundaries. The example of Elsie Lacks opened the most humiliating story that happened to the family at all. Dangerous experiments on human brains and psychic were abolished long time ago due to its unethical nature.

The last part of the book revealed that after the shocking and important findings, the Lacks’ family moved on with their lives. As the legal practice had shown for similar problems, they cannot gain profit from HeLa cells. The family is not able to stop the researches with the cells of their mother as well. Nevertheless, no one of them have any intention to intrude science as they decided that her mother had done a tremendous help for people. While the book was writing, several people organized a museum in Henrietta’s inheritance. Rebecca Skloot herself decided to give the part of the money, gained from selling a book, to Henrietta’s charity. Finally, the world had found out the real name behind the HeLa cells recognized her enormous contribution.

When the scientists got profit from the cells, the Lacks suffered of pain, deprivation and disability to access the knowledge of any kind. The book touches the ethical problems within society, moral rights, and the ability to preserve one’s body from any intrusion. Racial prejudices had not disappeared yet from the face of our planet. Though, one can see that society learns how unethically and immorally the idea of superiority might be, and what consequences such ideas can cause.

By dissecting one family, Rebecca Skloot revealed the utmost abnormity and inadequacy of such ideas, especially in the field of science, where people became just subjects for the experiments and manipulations. It is crucial to admit, that even giving the answers to all questions, the book left a bad aftertaste of guilt and sadness. Knowing that almost every person in the world can use the gains of science conducted on the HeLa cells, the Lacks family had suffered the whole life without knowing their mother.