The Value and Ownership of Human Tissue and the Ethical Dilemma in the Case of Henrietta Lacks

Rebecca Skloot’s book, “The Immortal Life of Henrietta Lacks,” is about a woman whose cervical cancer was the source of a cell line used in drug development and other research. Despite this, she remained virtually unrecognized. Shouldn’t she have shared in the profits of one of the most successful cell researches ever done? Even though her cell name may be immortal, the name of Henrietta Lacks could remain unrecognized. People should be compensated or at least recognized for something that isn’t only theirs to begin with but also leads to medical advancements and brings fame to those who may not deserve it.

Even though her name may never be recognized, no one ever said it would be. In no case does it make sense to provide patients or their families with pre-planned compensation. To compensate the person whose tissue leads to a major discovery or a profitable cell-line would turn tissue donation into a lottery where many people give, but a lucky few get a big payout. It could lead to payment for the mere attempt of cell research with no significant outcome, akin to paying for a movie you never get to see. In the case of Henrietta Lacks, if she had been compensated, it would have simply led to others thinking they should be as well for doing something minor compared to the discovery her cells led to.

This issue leads to the question: Does someone own their bodily tissues? If someone’s tissue were to be considered their property in the same way as cars and houses, then it seems clear that the tissue should not be taken from them without consent or used in any way that may not have been agreed upon. Also, they should receive some form of compensation if profits are made from the research. If tissue is considered property, then unauthorized use would be legally considered theft. However, when it comes to the rights of cell tissue, lines blur. In the U.S., there is a fundamental right to privacy that protects the right to control one’s body. If society believes in the rights of a person to their body, then why are the same rights not recognized for someone’s tissue? Once tissues or cells are removed from the body, they are no longer considered by the law. Is it the fact that tissue samples are separated and technically no longer part of a person? Or is it that the process of making this fall under the law would be troublesome to researchers and scientists, thus taking longer and requiring more money for a basic right? When debating the topic of whether cells should be removed, the famous case of William Catalona often arises.

William Catalona was a professor at Washington University. He collected samples from prostate cancer patients for a study. All patients signed a form at the time, which gave consent to Catalona to use the samples. Soon after, William was offered a position at Northwestern University. He took his belongings and the samples to further his study. Washington University took action promptly, asserting that the samples were indeed school property and should not relate to Catalona. The issue went to court. William Catalona enlisted patients to testify against Washington University, insisting that they intended their samples to be used by an individual rather than a university. The outcome was that the university retained possession of the samples as they had obtained the patients’ consent and housed the specimens since the beginning. This case illustrates that even if an individual has provided written and spoken consent regarding their property, the party deemed more significant often prevails due to confusion around ownership once the property leaves the body. This instance, frightening to some, opened the possibility that organs could potentially be handled similarly if there were no prior agreements made after removal. This confusion in the scientific community has long fueled concerns about striking the right balance between individual rights and the preservation of medical progress.

The pivotal question is, who should profit from the value of human tissue? Before the topic of cellular exchange reached a governmental level, the materials were freely exchanged among scientists undertaking cell research. However, as these samples gained value, cell lines began selling their samples only for non-commercial research. In the case of Henrietta Lacks, no one knew they could be compensated until 20 years after her death. She passed away in October of 1931, leaving behind five children who were already financially disadvantaged. Neither Henrietta nor her relatives knew that her doctor had given her tumour sample to Dr. Gey. Without this sample, Dr. Gey’s fame would not have been possible. Through this sample, the (HeLa) cell line was commercialized and continues to be sold worldwide to date. Strangely, no compensation has ever been provided to the Lacks’ family, who continued to struggle economically. Only twenty years later, it was mistakenly discovered that Henrietta Lacks contributed to saving thousands of lives. Although proud, the family also felt exploited. Rebecca Skloot wrote in The Immortal Life of Henrietta Lacks, “It had never occurred to anyone to ask permission to take their mother’s tissue, tell them that her cells had changed scientific history, or even say thank you.” The family perceived this more as white scientists exploiting a black woman’s body, rather than mere theft. This case, despite occurring a long time ago, illustrates that patients still have limited control over the removed parts, often doing what doctors recommend and signing the forms without question.

Ultimately, these cases all conclude unjustly, yet people do not seem motivated enough to investigate the fate of their tissues or facilitate change. Despite scientists’ efforts to skirt the topic to evade further complications, one should ascertain the ownership boundaries next time they participate in tissue removal or cell research.

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