In her novel, The Immortal Life of Henrietta Lacks, author Rebecca Skloot addresses the many variations of ethics by telling the readers about the life of a poor African American Southern tobacco worker living in a time where racism was apparent. In 1951, Henrietta was diagnosed with cervical cancer when she was 30 and reseachers had taken her cells without her permission. The major concern that arises in the novel in my opinion is the lack of informed consent and knowledge given to Henrietta before and her family afterwards. Regardless of race, gender, or socio-economic status, doctors and researchers have a moral obligation to inform their patients thoroughly, provide them with side-effects that may occur, and to communicate properly with the family in case of death. While these and some other issues are merely portrayls, The Immortal Life of Henrietta Lacks provides a narrative field within which these issues can be observed by reflecting on the experiences of many different individuals.
According to one source, informed consent is defined as “a patient’s consent to a medical procedure must be “informed.” A patient gives an “informed consent” only after the [insert type of medical practitioner] has fully explained the proposed treatment or procedure.” (Web) The history of informed consent could be said to have derived from the Nuremberg Code, established in 1947, which was stated in the novel as, “a ten-point code of ethics… which was to govern all human experimentation worldwide.” (Skloot 131) This code was created after Nazi doctors used Jewish prisoners for medical research, without their consent. Informed consent is a legal doctrine developed by the courts and has been adapted throughout the years, but when Henrietta was diagnosed at Johns Hopkins with cervical cancer, this was not the case. To properly ‘inform’ one must make known and clear. Lacks gave consent but it was not communicated to her.
Communication between a doctor and his patient is key. According to one source, “ Informed consent is more than simply getting a patient to sign a written consent form. It is a process of communication between a patient and physician that results in the patient’s authorization or agreement to undergo a specific medical intervention.” (Web) In the 1950s the standard of medicine was paternalism, whereas the doctor was seen as the father and the patient as a child; the doctor having all the power in what’s best for the patient. However today it is more seen as patient autonomy. Meaning the patient has more self control but physicians also have the responsibility to generate all means necessary for the option of autonomy. The doctor-to-patient relationship holds that the relationship between the two is mutually respected, shares knowledge and/or trust, and gets across all information needed; especially the side-effects involved. In the communication process, the doctor should disclose the risks and benefits for the given treatment and/or procedure. Henrietta was not told about the risks of becoming sterile from the radiation treatment though Hopkins had been using radium to treat cervical cancer since the 1900s. One of the effects from the radiation was that her skin had become black and charred. Skloot states, “ Each day, Henrietta’s doctors increased her dose of radiation… Each day the skin on her abdomen burned blacker and blacker, and the pain grew worse.” (Skloot 65) You would think that the doctors would have stopped the treatment with the side-effects she was having physically, especially the pain. But then again, the lact of communication and autonomy was evident in those days.
Before Henrietta had even died, Gey had learned that the cells they stole from her while doing a routine biopsy, were still continually growing at a fast rate. After she had died, Gey knew that it was illegal to remove any tissue from her body without permission. When Day had refused the autopsy the first time around, he was again asked. Skloot states that, “ they said they wanted to run tests that might help his children someoday.” (Skloot 90) So finally Day agreed even though that was not their intention. While her cells are multiplying and being used for research, the Lacks family had no clue what was going on. Was that fair? Well no, of course it isn’t fair. But you have to ask yourself this, would they have known what the cells were used for? I honestly don’t believe they would have, but that is no reason to keep them in the dark. They were not told about the HeLa cells until 20 years after her death; they found out when her name was made public. Many believe that since the pharmacuetical companies have manufactured the HeLa
cells and made money off of it, that the Lacks family should also gain a profit. However I feel differently in some ways.
When something is taken from you whether its justified or not, it becomes unpossesive to you. Skloot states, “When tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes.” (Skloot 205) In the case of John Moore, this was believed to be factual. Moore had tried to sue for the property rights of his cells and lost, even though the judge ruled he wasn’t given the proper knowledge.
In conclusion, I believe that Henrietta Lacks and her family should received better treatment and respect. The lack of informed consent was morally wrong. The doctors knew better, but they also knew Henrietta did not. Henrietta has helped out millions and her family should be grateful for that, because in the end I am sure that is exactly what she wanted; to make people happy. We have a strong code of ethics now, and I truly do believe her story had some part in it, little or small. So yes, I can agree that in some cases the ends do justify the means.
“Informed Consent” Patient Physican Relationship Topics, American Medical Association. Web 9th December 2011.
“Informed Consent Definition” California Civil Jury Instructions, Justia. Web. 9th December 2011.
Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Crown Publishers, 2010. Print.