In the time since Henrietta Lacks’ unfortunate experience with her doctors, the medical field, legal system, and the world, many things have changed in the world of scientific research and medicine. Some of the most significant changes have been the scientific and social laws surrounding cellular testing. In the 1950s, when Henrietta Lacks’ cancer cells were taken from her in a routine biopsy by Johns Hopkins doctors, she was unaware of the mass industry that would be built and continue to grow because of her cancerous cells. Within years, scientists, doctors, and researchers worldwide had begun using her cells for all sorts of research and experimentation. The few samples of cells taken from her were replicated an incalculable amount of times and used by people that didn’t even know the origin or the woman they were taken from. Some researchers even went on to create a HeLa (the name given to the cells after Henrietta Lacks) factory, turning what was once a few cancer cells into a multi-million dollar operation spanning across the entirety of the globe. Though Lacks’ story is told now, and many are aware of her nonconsensual contributions to the world of science, she is not the only one to whom this has been done.
Throughout Lacks’ time, cases of doctors experimenting on their patients and essentially stealing from them by removing parts of their bodies were a major issue in the United States. Since then, this has seemed to come to a stop, at least in legal medical facilities and with licensed professionals. However, uninformed consent is still a huge issue within the world of medical ethics, with many not knowing that they have unfortunately contributed their bodies. A New York Times article from 2015 explores how without their knowledge, “bodily tissues from millions of Americans are used in research.” The article goes on to define these bodily tissues as “clinical biospecimens”, meaning they are samples left over from blood tests, biopsies, and even surgeries. This means that though much has changed since Henrietta Lacks’ time, and it would not seem as if this kept happening all over the United States, and likely in many other countries, situations similar to HeLa may be occurring and ongoing.
In the world of medical ethics, informed consent is critical. The American Medical Association states that “informed consent to medical treatment is fundamental in both ethics and law”. With the mention of law, it would be important to know the legal definition of informed consent. The Legal Information Institute of Cornell Law School defines informed consent as “An agreement to do something or to allow something to happen, made with complete knowledge of all relevant facts, such as the risks involved or any available alternatives”. With this in mind, if what the 2015 New York Times article presented was, in fact, true, then wouldn’t every single experiment involving a part of an unknowing patient’s body illegal? Doesn’t this raise an issue to the very foundation of the medical system in the United States, and shouldn’t this be something that we fix? This is not meant to be a research article into the conspiracies and flaws of the United States medical system and organizations governing it. Rather, this should be seen as a call to action for citizens, no matter who you are—a wake-up call to know what may be happening behind closed doors that we’re supposed to trust.
Even though informed consent is more regularly used today, some laws involving cellular testing have not fully been sent into place. For example, some scientists today still believe that researchers and physicians shouldn’t need to get a patient’s consent to study their blood or DNA. Why is this even being considered? Apart from our own beliefs and opinions, it seems as though the answer is rather simple when obtaining a patient’s consent: ask the questions and get their approval. In the last year of Obama’s presidency, scientists criticized the administration’s controversial proposal that would have “required all federally funded scientists to get permission from patients before using their cells, blood tissue, or DNA for research” (NPR Shots). These scientists argued that “the mandate for consent… was unnecessary and would hinder crucial research”. Many agreed with this idea that mandating necessary consent was futile. Biochemist and president of the Association of American Universities, Mary Sue Coleman, argues, “Every time you have to get consent, it adds costs and complexity to the system that would have affected millions of samples — and, we think, would have limited research.” In most scientists eyes, asking for informed consent is just a tedious and nonessential process. Despite this shocking outrage from something that most would deem a necessary rule, some states have created laws to safeguard genetic information. According to the National Conference of State Legislatures, “The majority of state legislatures have taken steps to safeguard genetic information beyond the protections provided for other types of health information. This approach to genetics policy is known as genetic exceptionalism, which calls for special legal protections for genetic information as a result of its predictive, personal and familial nature and other unique characteristics.” The state laws for genetic privacy restrict any party from carrying on with a test or any particular action without informed consent. The NCSL also stated, “Laws in 17 states require informed consent for a third party either to perform or require a genetic test or to obtain genetic information. Twenty-seven states require consent to disclose genetic information. Alaska, Colorado, Florida, Georgia, and Louisiana explicitly define genetic information as personal property”. This means that while genetic exceptionalism is important in the eyes of the legislators in states all over the country, the same rules aren’t being applied to other types of testing, including cellular testing. This means that legislators and lawmakers, along with activists and medical professionals, need to come together and set consent laws in place for cellular testing and experimentation. By having everyone on the same page and enforcing specific regulations when it comes to patient consent, the process will become less susceptible to misinterpretation and faulty research without the consent of patients.
The impact of the HeLa cells still very much exists and is ineradicable in the world of medical science. Henrietta Lacks’ cells will continue to benefit countless numbers of unknowing patients because of the effects her cells had in research. In creating new vaccines, finding cures for diseases, developing treatments, and so much more, Henrietta Lacks’ cells have accomplished so much for our world. It’s heartbreaking but inspiring; however, this case has exposed flaws in history all the way up to our current medical organizations and systems. Nothing can be done to reverse what happened to Henrietta Lacks in the 1950s and what happened to so many others just like her - unleashing another problem in the dark history of our nation. Nonetheless, that doesn’t mean that we can’t use this event in our history as a lesson of what not to do. In many ways, she contributed to the field of science unknowingly. However, we have to continue to ask ourselves: at what cost does this become acceptable? Though this is something that occurred in the past, it is still something that we as a society and those in the science of medical testing can continue to learn from. It is also important to note that Henrietta Lacks’ family was not given any compensation for the exploitment of her cells without her knowledge. The important thing to focus on is that science must right this wrong by changing the processes for researching with human specimens without consent and assuring that informed consent is mandated in every treatment, test, and research project. It is only right.
To learn more about Henrietta Lacks’ story and to support others dealing with similar battles feel free to visit http://henriettalacksfoundation.org/ for more information and to find ways to help.
Works Cited
AMA Authors. “Informed Consent.” American Medical Association, www.ama-assn.org/delivering-care/ethics/informed-consent.
Cornell Law School. “Informed Consent.” Legal Information Institute, Cornell University, www.law.cornell.edu/wex/informed_consent#:~:text=An%20agreement%20to%20do%20something,involved%20or%20any%20available%20alternatives.
FindLaw authors. “Understanding Informed Consent - A Primer.” Healthcare - Patient Rights, FindLaw, 2017.
NCSL Contributors. “Genetic Information: Legal Issues Relating to Discrimination and Privacy.” Genetic Privacy Laws, National Conference of State Legislatures, Mar. 2008.
Schumaker, Erin. “Henrietta Lacks’ Cells May Be Responsible For The Future Of Medicine.” The Huffington Post, TheHuffingtonPost.com, 30 June 2017.
Skloot, Rebecca. The Immortal Life Of Henrietta Lacks. New York: Crown Publishers, 2010. Print.
Skloot, Rebecca. “Your Cells. Their Research. Your Permission?” The New York Times. The New York Times, 30 Dec. 2015
Stein, Rob. “Scientists Needn't Get A Patient's Consent To Study Blood Or DNA.” Shots, NPR, 18 Jan. 2017.
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