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Running head: HELA: HENRIETTA LACKS

The Ethics of What Was Done to Henrietta Lacks Travis Woodall Cultural, Legal, and Ethical Issues for Health Sciences

HENRIETTA LACKS

Henrietta Lacks was the mother of five children, poor, but living her life to the fullest. In 1951 she was diagnosed with cervical cancer. Unable to afford medical care, she, like most poor black people, went to Johns Hopkins Hospital. 1951 was also when gynecologists were first trying to develop effective ways to treat cervical cancer, and like many other women who went through the cancer ward, a sample of Henriettas tumor was taken without her consent. However, unlike many other women, Henriettas cells were unique. They became the first human cells to survive outside of a body. Shortly after they were first cultured, the cells were shared among researchers and proved to have many uses beyond studying cervical cancer. While they were cancerous, they acted like healthy cells in most ways, and they would prove vital to creating the polio vaccine, chemotherapy, cloning, gene mapping, IVF and, countless other medical advances. Medical advances, which would make huge sums of money for some people, even while Henriettas family struggled to pay their own medical bills. Henriettas treatment proved unsuccessful, and she died after the cancer spread rapidly throughout her body. Henriettas case has become notorious as a plain and horrific violation of her rights, but analysis of the situation shows it to be more complex than that. Henriettas cells were unique and therefore presented a unique opportunity not only for some people to make money, but also for improved medicine for everyone. Life became better for billions because of a small on her part, even smaller given the death sentence of cancer. If she had said no, many more peoples lives would have been cut short by diseases that her cells have helped to treat. The doctors did the right thing in taking the sample; they did the wrong thing in not informing her family or her about what they had done. Henrietta did not innovate intentionally and would not have been able to do anything with her cells, they represented a unforeseen if eventually great breakthrough for medicine and hers like anyone elses should have been taken.

HENRIETTA LACKS

In a country where everyone is supposedly created equal, different races have never been treated that way. Among the United States worst crimes, slavery, in addition to causing millions of black people to suffer and die, left a country largely built on their backs that would not give their descendants treatment equal to whites. Black people have not been treated fairly. In fact, they have been treated unfairly for so much of history that when looking at Henriettas case, its easy to think that because she was black, there was some sort of special abuse present. There have been many black people who have suffered at the hands of doctors, from the infamous Tuskeegee Study to experimentation on the mentally handicapped, including Henriettas own daughter. However, Henrietta was not personally a victim of such abuse. Henrietta had few choices among institutions, and she could only afford Hopkins. While the care was free, the practice of experimenting on patients who were receiving free treatment was standard practice. 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 (Skloot, 2010). Of course these patients were mostly black people, but they also included people of other races who used the free system, and for whom Hopkins was the only choice. Henrietta was not a special case, scientists took samples from all the women who came through with cervical cancer. No one involved in Henriettas case expected her cells to thrive the way they did. The circumstances were such that she was black, and that cells were needed for research. Even today, researchers use tissues without informed consent from the donor in order to do research and improve medicine for everyone, whether they are black, white, or otherwise. True, the researchers might do this out of self-interest, but if their self-interest leads to a better world then at least their greed leads to something good. Even so, Henriettas cells were not cultured to make money. They were shared among researchers for free,

HENRIETTA LACKS

and then later, when larger quantities were needed, the opportunity to make money was taken by different people. Another problem with Henriettas case is that she and her family were poorly educated. Even the few members of her family who were able to receive a high school education did not get much out of it. The failure of the medical culture of the time was in their failure to acknowledge the humanity of their patients. Doctors did not feel the need to explain themselves, and it was not a patients place to ask. The first Henriettas family heard about Henrietta being alive was when doctors discovered a problem with HeLa, it was too successful. The cells drifted through air and rode on the hands of researchers into batches of other cell cultures and outperformed the cells that were originally cultured. Scientists thought that they had grown different cell lines, many of which it turned out had simply been taken over by HeLa. They needed genetic tests to check for contamination, and went out to Henriettas family. They werent clear about their intentions when they were going in and the family was led to believe that they were testing for cancer. They were unable to understand what was meant when doctors said that part of their mother was still alive. When the doctors told the family that Henriettas cells were used in nuclear bombs to test how cells respond, and how HeLa was routinely destroyed, it scared them. The family thought that Henrietta, or part of her, was still alive and in pain. In particular, Henriettas daughter Deborah became physically ill with worry, and stayed that way for years. Henrietta was a decent person; had she been informed of the need for cells and the potential benefits, she would have likely consented. Her family was similarly made up of decent people who, overall, were glad that she had made such positive contributions to medicine. However, the failure of doctors to explain themselves and their procedures led to unnecessary pain and confusion for decades. There is much to be learned from this, and thankfully medicine

HENRIETTA LACKS

has improved to where doctors are required to be clear and donors receive protection to make them anonymous. Legally, the doctors involved in Henriettas case had done nothing wrong. At no point was any law broken. And again, even today, tissues are used in research without express consent. This allows medicine to progress quicker. For some people, there are issues here: Many people are concerned about how their tissues will be used. However, the value for research has outweighed peoples desires to control parts of their body, especially since those with potentially valuable cells might hold out for money, and potential progress could be lost. Nevertheless samples should be taken and used from everyone. No one is harmed when their tissues are used and while there are issues involving anonymity that are very serious, considering a person and their genetic failings can be identified from even a single cell, the reward for everyone is too great. Of course there is also the potential to make mountains of cash off of medical breakthroughs and associated products. However, most people do not, and will never, have cells that are worth millions of dollars. A more reliable way to get rich off of cells would be to go into biotechnology. In Henriettas case she had cells that would make millions by being sold to researchers. In her familys hands, those cells would have been worthless. Whether or not it was fair, that Henriettas family never had the chance to learn what they would need to know in order to make money off of her cells is a more meaningful question. Greed might play a role in many innovations, but in order for it to be beneficiary, the possessor of that greed also needs to have knowledge. Incentivizing hard work with financial rewards works, and it generates progress. To be sure, if the argument is made that everyones cells should be common property, then any medical results gained from those cells should be as well. In this respect, HeLa provides a good example. The research team lead by George Gey did not patent the cells and businesses arose to

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supply them, but they were, at least in principle, available to everyone. Its not that people making money off of cells is bad, but everyone should benefit from the advances. Does Henriettas family deserve money because their mother had special cells? No. However, they do deserve adequate medical care, because theyre human. While their mothers importance was circumstantial, their needs are not. Everyone deserves to have their health problems treated, because everyone has helped build up the system that developed the treatments. Medicine advances based on everyones tissues. When they are doing profit-seeking research, scientists do not have to compensate the people they came from. In fact, most of America will pay a fee for the privilege of part of them being taken. Some of it will be stolen away for some unknown persons possibly nefarious purposes. Medicine and its advances arent based on one person, its based on society as a whole. Everyone who contributes tissue, whether or not they consent, has contributed to the healthcare of us all. Through Henriettas tissues, research was done that has benefited all of humanity. HeLa came at a time that was critical for polio. For the first time there was hope of a vaccine, but the only way to test it would be to use monkeys, which would be expensive and time-consuming. HeLa, however, was highly susceptible to the virus, and this meant that they could bring it to people much quicker. Shortly after describing this development, the author Rebecca Skloot says, Cells from a black woman were used to help save the lives of millions of Americans, most of them white, (Skloot, 2010) and she is technically correct; most Americans are white. Polio, however, is all but eradicated across the entire human family. Cells from a black woman have helped men, women, and children across every complexion the sun produces. Few people will ever have as much to offer as Henrietta, but seeing medicine as an enterprise with humanity at the center, we can understand that everyone deserves what everyone has to offer.

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Theres no perfect way to do this, but at the very least, the challenge is clear. While it is easy to say that people have a right to medical care, it is harder to implement an effective system of providing it. Balancing the need to provide an incentive for those who choose to go into medicine, and the needs everyone has of medicine is no easy task. While it is important for doctors to be open about what they are doing, it is equally important for patients to be open to things such as tissue donation. Medically speaking, the worst violations of human rights come about when people are exploited for advances in research. However, balancing the need to improve modern medicine with the need to respect the rights of patients is similarly sticky. There is little hope of us working through this without adding to countless regrettable events, such as the case of Henrietta Lack. However, the best place to start is by acknowledging that everyone deserves to medical treatment, and realize that those who establish careers in medicine deserve benefits. Perhaps we will never have it both ways, but this should always be kept as the ideal. Lastly, the benefits and costs of practicing medicine should be open to all who want to undertake those rigors. The lack of opportunities presented to the Lacks family and the generations before them were far more detrimental to their lives than the taking of those cells from Henrietta. In fact the number of Black people entering medical school is declining slightly (CAP, 2013), making care that much harder for Black people to acquire. The true injustice is not in what was done to Henrietta, but that what was done to Henrietta had to be done by a white doctor.

HENRIETTA LACKS

References CAP. (2013, March 5). WHERE ARE ALL THE BLACK DOCTORS? REPORT SHOWS DECLINING NUMBER OF AFRICAN AMERICAN MEDICAL STUDENTS. Madame Noire. Retrieved May 9, 2013, from http://madamenoire.com/tag/african-americansenrolled-in-medical-school/ Skloot, R. (2010). The immortal life of henrietta lacks. New York City, New York: Crown Publishing Group.