The following is a detailed report and personal take on the bioethical issues surfacing from the brilliant book, The Immortal Life of Henrietta Lacks by Rebacca Skloot.
She is usually identified as Helen Lane, but often she has no name at all. She is simply called HeLa, the code name given to the world’s first immortal human cells – the cells that were cut from her cervix just months before she died. (R. Skloot, 2010, pp1).
Her real name was Henrietta Lacks. Until recently the true story of Henrietta Lacks, Helen Lane, and Helen Larson was buried, lost to the dark abandoned closets of John Hopkins hospital and surrounding medical facilities.
The truth of Mrs. Lacks and her family was resurrected and shared in Rebecca Skloot’s moving book, The Immortal Life of Henrietta Lacks. The following will convey the story of Henrietta Lacks, focusing on the bioethical issues that arose during her time at John Hopkins Medical Center and long after her death. The life, death, and immortality of Henrietta Lacks has revolutionized the cell culture industry providing numerous medical advancements in polio vaccine, chemotherapy, cloning, gene mapping, and in vitro fertilization. The cellular remnants of Henrietta Lacks can be found worldwide, but it began in the rural countryside of Virginia.
Henrietta’s life story began in the town of Clover, Virginia in the 1920’s, where Henrietta lived along with countless Lacks family relatives. She was married to her first cousin David Lacks and had a total of five children. During Henrietta’s life, the town of Clover was divided between white Clover and what came to be known as Lacksville, an African American dense community. A distant female relative was rumored to have had children with her white Lacks slave owner. Lacksville now served as the home for many of the future lines of African American Lacks, including The immortal Henrietta Lacks.
In 1941, Henrietta and her husband took the then two children and moved from Clover to the steel driven town of Turner Station, Maryland. Turner Station was a community built around Bethlehem Steel’s Sparrow Point steel mill and contained one of the largest and youngest African American communities in Baltimore County. As Rebecca Skloot describes, In Henrietta’s day, Turner Station was a town where you never locked your doors. Now, there was a housing project surrounded by a 13000-foot-long brick-and-cement security wall in the field where Henrietta’s children once played. Stores, nightclubs, cafes, and schools had closed , and drug dealers, gangs, and violence were on the rise. (R. Skloot 2010, pp.69)
In 1951, while pregnant with a her youngest child Zachariah, Henrietta began experiencing immense pain in her lower abdomen region. Initially, the Lacks family wrote off the pain and affiliated it with Henrietta’s current pregnancy. However, in January of 1951, not soon after the birth of her fifth child, Henrietta Lacks visited John Hopkins Hospital’s gynecology clinic complaining of a knot in her stomach and persistent spotting and bleeding post pregnancy. The doctor’s initial diagnosis after Henrietta’s pregnancy focused on syphilis, a sexually transmitted disease that had ravaged the African American community of the time as highlighted in the Tuskegee syphilis project. Although the doctors were focusing their efforts on syphilis, Henrietta was convinced it was something much different.
She filled her bathtub, lowered herself into the warm water, and spread her legs. With the door closed to her children, husband, and cousins, Henrietta slid a finger inside herself and rubbed it across her cervix until she found what she somehow knew she’d find: a hard lump, deep inside, as though someone had lodged a marble just to the left of the opening to her womb.(R. Skloot, 2010, pp. 15)
Soon after, Henrietta’s Doctor confirmed her assumption, she was diagnosed with epidermoid carcinoma of the cervix. Upon diagnosis, a sample of the tumor from Henrietta’s cervix was taken and sent to Dr. George Gey for examination and attempted culture of the sample. It was business as usual for the prominent head of research and tissue culture at John Hopkins as he closed his lab; however, he would soon see that these cells were unlike any he had encountered.
The next day Dr. Gey returned to find that Henrietta’s cells had not only survived but thrived, multiplying in number and continuing to grow. It was here that Dr. George Gey established the first immortal cell line on which endless possibilities in the advancement of science and medicine would soon heavily rely. Meanwhile, in an attempt to combat Henrietta’s cervical cancer, radiation treatments soon began to leave her internally charred from the high dosage of radiation exposure. As the radiation treatments increased, so did Henrietta’s pain. On August 8, 1951 Henrietta was admitted into John Hopkins Hospital where she had asked to remain permanently due to immense pain and lack of proper care at home. Although further treatments were administered, few offered any relief as the pain increased. On October 4, 1951 Henrietta Lacks died from uremic poisoning.
Following her death, a partial autopsy was performed which showed the cancer had metastasized through her body- The tumors had completely blocked her urethra, leaving her doctors unable to pass a catheter into her bladder to empty it. Tumors the size of baseballs had nearly replaced her kidneys, bladder, ovaries, and uterus. And her organs were covered in small white tumors—it looked as if someone had filled her with pearls. (R. Skloot, 2010, pp. 90)
Although Henrietta’s human life was over, the immortality of her cellular life continued to grow. After Dr. Gey harvested the culture, an abundance of Henrietta’s cells, or HeLa, were sent out to various labs around the world for individualized testing. HeLa, along with being used for the polio vaccine, also played a vital role in 1955 as the first human cell ever cloned. Later HeLa cells would be used in the advancement of gene mapping, cancer and AIDs, as well as the effects of radiation and toxicity. Year after year, science as a whole has profited from the use of HeLa.
Professor David Kroll of North Carolina University, emphasizes this point by displaying a few financial figures: “…ATCC now sells these stocks of HeLa cells for $359 to nonprofits and $431 to profit entities.” Dr. Kroll goes on to establish HeLa’s financial stature in molecular biology by declaring, “Invitrogen sells various types of HeLa cells for $995 up to $10,250.”
Although Henrietta’s personal financial shortcomings have been long since forgotten, her contribution to science cannot be understated. Her physical life story has forced us to reexamine our medical ethics and the immortality of HeLa will continue to live on for generations to come.
The bioethical issues of the time were underdeveloped to say the least. It is essential to paint the picture of medical care during Henrietta’s lifetime to fully comprehend her situation. Four years prior to Henrietta’s death, in 1947, the questionable testing of the Nazi regime on their Jewish concentration camp prisoners was placed on the global stage. The Nuremberg trials ruled in favor of the patient, shifting slightly from doctor paternalism to patient autonomy.
Following the trials the ten-step Nuremberg code was adopted. It focused on the patients essential right to voluntary informed consent, free of coercion and a focus on beneficence. Beneficence spotlighted that the well being of the researched patient must be held in high regard. Coercion then fixated on the need for a patient to begin and remain in treatment under their own free will. Although the Nuremberg code had been announced, it did little to influence the medical treatment of Henrietta Lacks.
Another extremely noteworthy case during Henrietta’s lifetime was the Tuskegee Syphilis study. Initially conducted in 1932, the project focused its efforts on the African American community where syphilis had run rampant. The primary issue in the Tuskegee Syphilis study was the patient’s lack of knowledge of their specific role. The participants in the study were not made aware they were being tested for syphilis, but rather for bad blood. Kept in the dark, the patients participating in the project unconsciously spread syphilis throughout the community only worsening the escalation of the disease.
Both the Nuremberg Trials and the Tuskegee Syphilis study lend a hand towards an accurate depiction of not only doctor-patient relationships in the 1950s’, but the treatment of African Americans within the medical field.
The primary ethical issue regarding the Immortal life of Henrietta Lacks is found in the murky application of informed consent. The idea of informed consent originated in Greece where as Dr. Pete Murry states, “patient participation in decision making for medical treatment was considered undesirable.” Though informed consent was not universally applied to the same degree, it reared its head again in 1914 with the case of Schloendorff v. Society of New York Hospital. Here Justice Cordoza ruled “every human being of adult years and sound mind has a right to determine what should be done to his body.” Despite the clarity of informed consent upheld in the courtroom, the cultural norms of the 1950s’ were much different from present day. The social treatment of African Americans played an integral role in their medical care; specifically in the Tuskegee syphilis study and the medical treatment of Henrietta Lacks. During Henrietta’s treatment the Nuremberg code was fresh in the mind of scientists, but the quest for scientific advancement proved to outweigh their moral obligation to the patient’s right of consent. Despite the Nuremberg Code of Ethics firmly announced, it was not necessarily widely accepted and practiced by doctors around the world.
In today’s medical community we have had the privilege of hindsight, and can attempt to learn from the medical malpractice of the past. Contrary to the 1950s’ application of informed consent, today according to the FDA 21 CFR Parts 50, 312, and 812, “applicable clinical trials initiated on or after March 7, 2012, informed consent documents must be in compliance with the new requirement in 21 CFR § 50.25(c) and include a specific statement that refers to the trial’s description.” Many of our ethical practices such as beneficence and informed consent have more strictly been applied in modern medicine.
Cases such as Henrietta’s have brought to life issues that we have so carelessly overlooked and placed them in the public spotlight for all to see. This type of recognition and application by the medical community has brought about a time where patients can begin to trust their doctor. The topic of informed consent is the primary issue within the book. Showing its ever expanding implementation in the medical fields, informed consent now applies to such cases as Duttry v. Patterson (2001) In this case, the surgeon misrepresented his qualifications to the patient regarding his familiarity in performing the surgery for esophageal cancer. Once word of the surgeon’s deceptive experience reached the patient, she promptly brought her lack of honest informed consent to the courtroom. Despite its defeat in the initial trial, Judge Del Sole reversed the decision declaring “…where a patient affirmatively seeks information concerning a doctor’s background and training they are entitled to accurate information, all if they do not receive it, they have a valid informed consent claim.”
This demonstration of informed consent continues to show the shift from doctor paternalism to patient autonomy and the right to an honest medical experience. Obviously we have come a long way since the Tuskegee syphilis study, The Nuremberg Trial, and of course Henrietta Lack’s treatment at John Hopkins. It is important however, to keep these issue at the forefront of our minds when practicing medicine in a continuously flux medical environment.
The name Henrietta Lacks will be cemented in my hippocampus for years to come. Her story not only opened my eyes to the evolution of medical care, but the moral and ethical issue we as the medical community are responsible for. The moral and scientific clash that took part in my reading of, The Immortal life of Henrietta Lacks, highlights our constant battle to be both human centered and scientifically based. For me simply the name HeLa is difficult to write or speak without some shimmer of shame. A name although respected globally in the scientific community for decades, is primarily affiliated with immortal cancer cells rather than a human life. Rebecca Skloot’s devoted journalistic skills uncovered the life and legacy of Henrietta Lack and her family, exposing a side of research we often set aside for the sake of advancement.
The shame I feel lies within my “big picture” mentality as I know the contributions of Henrietta’s cancer cell have saved many lives and propelled countless discoveries in medicine to this day. Yet my empathy for Henrietta and her family outweighs my excitement of scientific advancement. Although Dr. George Gey did not financially profit from the sale of his immortal HeLa cells, Rebecca Skloot showed he still lacked the empathy in his eagerness to obtain a sample..
As Henrietta’s body cooled in the “colored freezer”, Gey asked her doctors if they’d do an autopsy. Tissue culturists around the world had been trying to create a library of immortal cell like Henrietta’s, and Gey wanted samples from as many organs in her body as possible (2010, pp. 89).
In a situation like this, although not ideal, connecting a name and a face to the research solidifies that persons place in the archives of science. The lack of true empathy from John Hopkins Hospital to Henrietta Lacks stuck with the medical staff years later as Dr. Gey’s assistant Mary recalls “when I saw those toenails, I nearly fainted. I thought oh geez, she’s a real person. I started imagining her sitting in her bathroom painting those toenails…”(pp. 90).
We have advanced through the misfortune of a competent woman and taken from her that with which she will never get back, a choice. We have allowed her family to be temporarily forgotten during their most difficult times. Let us not make literal Max Planck’s quote, “Science advances one funeral at a time” but rather allow the person to be honored in such a way as to warrant the power of true informed consent cannot be understated and left to diminish to that of the 1950’s.
My quest for scientific advancement comes second to my moral obligations involving the treatment of patients. Some of the issues that arose ethically for me along the way were societies obvious awareness of African Americans and their placement within the community. The medical methodology was perhaps somewhat equivalent to white Americans, however the fashion in which African Americans were treated during that process left me feeling the true racial divide of the time. Beneficence was but a word applied to the good of science rather than the good of the family of Henrietta Lacks. This same lack of beneficence has had an irreversible ripple effect through the entire Lacks family as they continue to struggle to find their rightful compensation. The best outcome for each individual involved was not met, leaving only one side benefitting from the overall experience. It is my firm belief that although we thirst for scientific advancement, we must never undervalue the rarity that is a human life.
Henrietta’s contributions following her death continue to grow, yet it is essential to give Henrietta’s physical life the honor and respect it deserves. The sensitivity required when a human life is being tested upon should be held in the highest regard with a focus on beneficence and informed consent . As the late Carl Sagan stated, “Every one of us is, in the cosmic perspective, precious. If a human disagrees with you, let him live. In a hundred billion galaxies, you will not find another.”