Argument Against Henrietta Lack

During the year of 1951, Henrietta Lacks, a less fortunate, young black woman, was told that she had cervical cancer by Johns Hopkins Hospital. During her diagnosis of cancer, cells were taken from her body without her knowing. She had simply gone to the gynecology clinic at Johns Hopkins to figure out why there was a “knot in her womb.” Being a black woman in the time of Jim Crow laws, the John Hopkins university hospital was the only hospital that agreed to treat her for her cervical tumor. Dr Richard TeLinde, researcher at Johns Hopkins, wanted to find and prove that noninvasive cervical cancer was actually just an early stage invasive cancer as this was a big debate in this field at the time. Without growing normal, noninvasive cancerous,

and cancerous cells however, he could not test or prove this. At the same time, another doctor, Dr. George Gey and his wife Margaret were also trying to develop cells that they would artificially be able to keep alive- they were trying to develop an immortal human cell line.

After it was diagnosed that Henrietta was in need of an operation, she signed a consent form that said, “I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of: ________” (Skloot 31).

She was under the impression that any surgery that was operated on her would be deemed “necessary.” However, whether or not the operations were necessary for her health was not exactly clear because after Dr. TeLinde performed multiple tests on Henrietta, he removed two samples of her cervical tissue, one from the tumor and the other was from healthy cervical tissue. After Dr. TeLinde used radiation to kill her cervical cancer, he sent these samples of her cervical tissue to Dr. Gey. The surgeon may have deemed this research advancement as a necessary reason to remove Henrietta’s cervical tissue during her

surgery.

A major ethical problem that arises here is the absence of informed consent. Informed consent, according to Merriam-Webster's Learner's Dictionary, is when “permission granted in the knowledge of the possible consequences, typically that which is given by a patient to a doctor for treatment with full knowledge of the possible risks and benefits.” Henrietta Lacks was not fully knowledgeable about all of the procedures that were going to be performed on her as well as their purposes. At the time this was legal because the term informed consent did not appear in legal documents and therefore Henrietta not being informed could not be deemed neither unethical or illegal.

Furthermore, Henrietta Lacks was not aware that Dr. Gey was in the process of developing an immortal human cell line. The cells that were collected from Henrietta’s cervix was the first time he was able to successfully grow a cell line. He names it HeLa after the first two initials of Henrietta Lacks’ first and last names. Dr. Gey began to give other researchers in this field samples of this immortal cell line, all without the Lacks family awareness.

The discoveries made with the HeLa cells began to flourish. Growing twenty thousand samples of HeLa cells each week, the Tuskegee Institute became the first cell production company. The company sent the HeLa cells to all sorts of laboratories and researchers as it was so useful it many kinds of research, from studying viruses and vaccines to determining various ways to handle cells. These cell lines also led to the discoveries of the Salk polio vaccine and the number of chromosomes in the human genes and many others. It also led to the launching of the Microbiological Associates company which was the first cell distribution company, creating a multibillion dollar industry in cell and tissue culture.

The Lacks family was never aware at this time that there family cells were part of this industry and had been commercialized. If they would’ve been informed, the poor family should have received some portion of the money that these cells were making because the cells belonged to their family.

Similarly, around the same time in the same place, the Tuskegee Institute, the Tuskegee Syphilis Study was happening, beginning in 1932. This experiment was to see how untreated syphilis affected the Negro Male. These patients had no informed consent as they were told they were being treated for bad blood, not being introduced to a disease. These subjects also were not given treatment or given the knowledge that treatment was available. This was very unethical as they were not given awareness of what they were going into, no informed consent, and were not provided with any treatment for their disease, the researchers knew that the subjects were going to die, and even after penicillin became the treatment for syphilis in 1947, researchers allowed at least 28 more men to die due to syphilis.(lcrm.lib.unc.edu) This portrays a social implication that researchers are able to take advantage of these poor and less forunate individuals because they don’t have any way of knowing that they are not being fully informed. Because they are not used to receiving health care, normally they put all their trust in these knowledgeable doctors. There are many other cases in which researches have taken advantage of underserved people without giving them informed consent in order to benefit from making large research advancements. This still happens today in third world countries, because as long as researchers have their own funding, they are able to do whatever they want. A lot of times they use coercion to “bribe” these underserved citizens in order to easily get participation in their studies.

All this time there were no legal documents requiring informed consent for any human-subject research.

And even though the Lacks family learns for the first time in 1973 that Henrietta’s cells are still alive, it wasn’t until 1991 that it became illegal for research to be done without informed consent (The Common Rule).The family of Henrietta Lacks had not been informed because there were no laws requiring it. This can lead us to believe that at the same time, many other individuals were not being fully informed as to what they were getting into. Today “many bioethicists question why the family [of Henrietta Lacks] was left in the dark.”

(genomicslawreport.com)

The European Molecular Biology Laboratory in Heidelberg, Germany, published the genomic sequencing of a HeLa cell line depositing the data into an online, open-access database in March of 2013 without the consent of the Lacks family (JJ Landry). The reaction that they got encouraged the researchers to take down the data from the online database. Questions began popping up as to “how the peer-review process failed to consider the interests of the family of Henrietta Lacks.” (genomicslawreport.com) Skloot, the author of The immortal Life of Henrietta Lacks, explains the privacy concerns she has for the Lacks family as while she acknowledged that consent had not been required. Furthermore, she “condemn[ed] the ‘whole system’ of biomedical research for failing to raise questions about consent during the peer-review process.”(nytimes.com). The Lacks family has been forbidden their right to privacy and confidentiality of their families genomic information. Jeri Lacks-Whye, Henrietta’s granddaughter states in an interview, “ This is private family information. It should not have been published without our consent.” When one gets a hold of an individual's genetic information, they are now able to retrieve reports full of genetic information(SNPedia.com). HIPPA(Health Insurance Portability and Accountability) was created in 1996 to protect the “privacy and security of health information” of individuals but stricter guidelines should be created as there are clearly still loopholes and people's private information is still being released.

As a society, we must realize all of the different the perspectives, needs, and interests of people contributing to biomedical research. Because everyone has a different frame of reference, we cannot assume that people are doing what’s “best” for bettering of human health as everyone has a different idea of this. To make sure that underserved people are not being taken advantage of, ethical rules should be further integrated and demanded to be followed within research design and research practice.