AUTONOMY OF THE BODY: WHO OWNS WHO AND THE IMMORTAL LIFE OF HENRIETTA LACKS
Lefkowitz wrote, “Every human being has an inalienable right to determine what shall be done with his own body.”
This was written in reference to the medical human experimental trials that were conducted on patients without their knowledge or consent. It is crucial to note that this was around 50 years ago and yet, till date, there is no clear law established about how much control people have over their tissues and cells. After reading the book The Immortal Life of Henrietta Lacks, for the first time I was made aware of the psychological and emotional damage illegal medical experimentation has, not only on the person involved, but also on their descendants.
The Lacks family said that “pounding in the back of their heads was a gnawing feeling that science and the press has taken advantage of them”. The Lacks family were uneducated, poor and mistreated because of their African-American heritage. It is only natural for them to feel violated and taken advantage of when they found out about their mother’s cells. The fact that they are uneducated must be taken into consideration because, for the longest time, they believed that their mother was experiencing pain whenever scientists experimented on her cells. They were ignorant and uniformed about the experiments and their questions had remained unanswered simply because no scientist seemed to care about the human behind the infamous cell line, nor did they have the patience to deal with her family. In the book, Rebecca Skloot says, “HeLa cells were omnipresent. I heard about them in histology, neurology, pathology; I used them in experiments on how neighboring cells communicate. But after Mr. Defler, no one mentioned Henrietta.” The fact that Henrietta was never mentioned by scientists, let alone common people is evidence enough that the scientists did not for a moments consider the fact that those cells came from a living, breathing human.
After reading the book, I was left with many unanswered questions, my brain bursting with conflicting thoughts and opinions. The entire book talked about how important consent was, especially to the living members of the family, and yet, it would be wrong not to take into account the immeasurable scientific advances made purely because of the HeLa cell line. While the idea of using her cells was not ‘evil’, it was seen as ‘evil’ by the family because they were left in the dark about it. It was also mentioned in the book that “many scientists believed that since (African American) patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment”. This leads us to seriously question the moral ethics of medical practitioners during the 1950s and gives sufficient basis for the African-American’s fear during those days about how they would be kidnapped to be experimented on.
Speaking of ethics, there exists a code of ethics called the Nuremberg Code which was formulated after the Nuremberg Trials. The first line in that code says, “The voluntary consent of human subject is absolutely essential”. This code of ethics governs all human experimentation world-wide.
However, some scientists are opposed to the idea of ‘consent’. This was voiced out during the Moore court trials. Moore sued the hospital for using the cancer cells in his spleen without his consent. He demanded financial compensation and wanted to patent his cells. The press quoted lawyers and scientists saying that a victory for Moore would “create chaos for researchers” and “(sound) the death knell to University physician- scientist”. They worried that patients would block the progress of science by holding out for excessive profits, even with cells that weren’t worth millions like Moore’s.
Moore lost the case but appealed once again in 1988 and the California Court of Appeals ruled in his favor, pointing to the Protection of Human Subjects in Medical Experimentation Act. The judges wrote “A patient must have the ultimate power to control what becomes of his or her tissues. To hold otherwise would open the door to a massive invasion of privacy and dignity in the name of medical progress”.
The Immortal Life of Henrietta Lacks covers all these issues and more, throwing light on the often ignored subject. However, it is almost impossible to be completely sure about what opinion one should have. While on the one hand I agree that consent should be an integral part of research, I wonder how much control one must actually be given over their discarded body parts. It is true that giving people total control would hinder scientific progress, especially if people keep claiming financial compensation. I think that patients from whom research materials are extracted should be kept informed of the scientific advances made using their cells and tissues but they should not be given financial compensation unless the scientific institution believes they are owed one. Since using discarded body parts won’t harm the patient in any way, the scientists should be allowed a free reign to use it in any experimental procedures they wish as long as they keep the donor in the loop. After reading the book and numerous articles about similar cases, one can be sure that the psychological and emotional suffering of the ‘donors’ and their family is not because their tissues and cells were used for experimentation but merely because they were not made aware of it. I found myself agreeing to this passage from the book which mirrored my thoughts exactly-
“Science is not the highest value in society”, Andrews says, pointing instead to things like autonomy and personal freedom. “Think about it”, she says. “I decide who gets my money after I die. It wouldn’t harm me if I died and you gave the money to someone else. But there’s something psychologically beneficial to me as a living person to know I can give my money to whoever I want. No one can say, ‘She shouldn’t be allowed to do that with her money because that might not be most beneficial to society’. But replace the word money in that sentence with tissue and you’ve got precisely the logic many people use to argue against giving donors any control over their tissues”.
Therefore, I believe, that donors should be given a certain amount of control over their cells- if they don’t want their cells used in weapon research, for example, then their wishes must be carried out. It must not be viewed as an inconvenience or something that ‘hinders the development of science’ but as something that allows people to exercise their basic rights of freedom, privacy and helps ensure their psychological well-being.
If you haven’t read the book, go to this link and buy the book on amazon (paperback or kindle edition)
This is a must-read for all and is definitely one of the best books I’ve read till date.