Medical Research With or Without Informed Consent In 1952, paralytic polio peaked in the United States with 21,000 reported cases and numerous deaths. It was in February 1952; Jonas Salk developed the world’s first polio vaccine at the University of Pittsburgh and by testing it on cultured “HeLa” cells, proved it to be effective for distribution by 1955. The cells he used were collected from a poor black tobacco farmer named Henrietta Lacks, born August 1st, 1920 in Roanoke Virginia.
In January 1951, Henrietta went to the gynecology clinic at John Hopkins Hospital in Baltimore Maryland and complained of having a “knot” in her womb. A malignant tumor, about the size of a nickel, was discovered on her cervix and when she returned the next week to receive radium treatments, Henrietta signed a consent form for the procedure. Before her treatment began, her doctor collected cancerous and healthy tissue from her cervix and sent them to Dr. George Gey. As head of tissue culture research at John Hopkins, Dr.
Gey had spent three decades determined to grow the first immortal human cells in hope of finding the cause and cure for cancer. All cells collected for a culture were labeled using the first two letters of the patients first and last name, therefore Henrietta Lacks culture was called HeLa. Henrietta’s healthy cells died within days, but her cancer cells continued to multiply and those cells are still alive today. Dr. Gey’s successful growth of the HeLa cells was one of the biggest medical breakthroughs of the 20th century.
Although doctors collected Henrietta’s cells without her knowledge, the research performed on the HeLa cells and subsequent medical advances resulted in benefitting all of humanity, which justifies the unethical decision not to provide informed consent. Some people believe that because Henrietta never gave informed consent to collect her cells, that the doctors acted unethically. It wasn’t until 1973, the Lacks family found out that Henrietta’s cells were still alive and being used for research and in 1975 they were being bought and sold for profit.
They were shocked and terrified when they learned about it. The Lacks family couldn’t understand how researchers were making millions of dollars in profits while they couldn’t even afford medical insurance. They felt as though Henrietta’s body had been abused and exploited and some family members feared they too would fall victim to research or cancer like Henrietta. The family was also manipulated by researchers at Hopkins, to donate blood for further research on the HeLa cells.
It didn’t seem to occur to the doctors and scientists on their quest for medical advances, to obtain informed consent, share some of the profits, respect the privacy of Henrietta and her family or explain the significance of the HeLa cells in scientific research and perhaps extend some praise and gratitude. It was quite damaging to Henrietta’s family when they learned of the sale and research of her cells and care should have been taken to protect the identity of the HeLa cells.
Many researchers generated profits from her cells and never considered how her impoverished and uneducated family could also have benefitted. Henrietta had the right to informed consent by today’s standards, but that was not common practice until 1974 with The Federal Policy for the Protection of Human Subjects that requires informed consent for all human-subject research. It is likely that scientists driven to find cures for the diseases threatening the population, lost sight of the human side of their research and mistreated the Lacks family.
Even though Henrietta and her family were not given informed consent and felt victimized, some of the most important advances in medicine over the past sixty years, have been made possible because of the tissue collected from Henrietta Lacks, the HeLa cells. With the introduction of the activated polio vaccine (IVP) in 1955, the number of polio cases decreased to 2,500 in 1957 and by 1965 only 61 cases were reported. Today, polio has been eliminated from the United States as well as the entire Western Hemisphere.
In the early fifties, the HeLa cells helped researchers understand how viruses like herpes, measles, mumps, fowl pox and equine encephalitis entered cells, reproduced and spread. Drugs for treating herpes, leukemia, influenza, hemophilia and Parkinson’s disease were developed with the help of HeLa cells. For example, my mom suffers from Parkinson’s disease and I can’t imagine how much harder her life would have been, over the past fifteen years, without her medication. In 1953, a geneticist working with HeLa cells in Texas made an accidental discovery and for the first time, enabled scientists to see human chromosomes.
Researchers began to identify genetic diseases like Down syndrome, Klinefelter syndrome and Turner syndrome by the make-up of chromosomes. Another example is my thirteen-year-old niece who has CDKL5 disease and because of discoveries with the help of HeLa cells, her parents have scientific answers to why she has the mind of an eighteen-month-old and how to best support and encourage her limited capabilities with a strong support system. It was more than thirty years after Henrietta’s death that her cells played a role in determining what caused her cancer.
German virologist, Harold zur Hausen, discovered a strain of Human Papilloma Virus (HPV-18) that he believed caused cervical cancer and compared it to Henrietta’s original biopsy sample confirming this is what caused her death. Now, with a vaccine available that helps prevents HPV-18, millions of women have been spared from suffering a dreadful death like Henrietta. Although there is evidence the Lacks family had been misguided and exploited by the medical community, whether this was their intention or not, it raised questions regarding ethics in relation to race, education and socioeconomics.
However, the social and medical ethics of the 1950’s was very different from today. It was standard practice to collect tissue samples without informed consent. Many patients received free treatment; therefore many scientists agreed that it was fair to use them as research subjects as a form of payment. These were desperate times, perhaps prompting desperate measures, in search of a means to control the polio virus thus developing human cells in a lab. We must not overlook the number of diseases, viruses and conditions that are understood, prevented and treated today, due to decades of medical research working with HeLa cells.
Works Cited: Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Broadway Paperbacks, 2011. Print. “Vaccines and Preventable Diseases: Polio Disease – Questions and Answers. ” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, n. d. Web. 25 Mar. 2013. <http://www. cdc. gov/vaccines/vpd-vac/polio/dis-faqs. htm>. “Vaccines. ” Polio Vaccine and Immunization Information. National Network for Immunization Information, n. d. Web. 25 Mar. 2013. <http://www. immunizationinfo. org/vaccines/polio>.