Below is my Informative Review Essay “The Forgotten: A Pharmaceutical Scandal of Over 20,000 Children” discussing scientific advancements that have developed from the discovery of HeLa cells, the cells of Henrietta Lacks that were taken without informed consent. Specifically, this paper goes over the exposed pharmaceutical scandal of Thalidomide, a drug that was initially used to treat morning sickness in pregnant women that had shown to be the cause of damaging birth defects of children. This essay aims to inform the public of the controversy of Thalidomide, acknowledge the ethical concerns of how Hela cells were acquired and reveal the continuous impact and distrust this has instilled in marginalized communities.

The Forgotten: A Pharmaceutical Scandal of Over 20,000 Children

The day of a child’s birth tends to be the happiest day of a parent’s life. Between planning a child’s future life goals and starting a family, the birth of a child marks a time of endless possibilities and an unbreakable bond of love between the parent and the child. At least, this is what Louise Merdus’ parents were expecting when they came into the delivery room in Chase farm Hospital in Enfield, Hertfordshire in 1962. However, while they entered the delivery room with the greatest feeling of hope and joy, they left with the most fear and guilt, in a case that would haunt them for over a decade.  

“Surely you’re not going to let a child in this state to live,” Merdus’ father blurted out at the sight of his newborn child. After seeing his daughter born, Merdus’ father almost fainted in the delivery room (Mcgrath, 2014).

Louise Merdus was one of the last babies ever to be born with the influence of the drug, thalidomide. Her mother took thalidomide to prevent her morning sickness, unknowing of the dangers it would cause her and the family generations to come. Her parents expected a fully formed, able-bodied baby. However, with Lousie’s deformity, she was lucky she survived. 

In 1957, thalidomide originated as a sedative sold by Grünenthal, a German pharmaceutical company, to treat all issues ranging from anxiety to morning sickness for pregnant women (Evans, 2014). By 1958, thalidomide went by the name, Distaval, under the drinks company Distillers, first licensed in the United Kingdom. Despite all the horrifying harm it caused, thalidomide had widespread success in Europe to the point where it became as famous as aspirin (Winerip, 2013). It was marketed and sold as a highly effective solution that was “safe” for pregnant women.  As the drug gained popularity to expecting mothers in Germany, Britain, and Australia during the 1950s and 1960s, there was an overwhelming surge in severe birth defects. Some babies born had no arms, legs, ears, flipper-like limbs, or had facial deformities that caused even more health and social problems as life went on. The use of thalidomide rose in the United States in loose clinical trials run by American drugmakers and were given to 20,000 Americans (Thomas, 2020). The drug stayed popular in 46 countries until irrefutable evidence connected thalidomide use to a global spike in the birth of deformed children. Louise’s mother, Vicki, was one of the final women who had been given the drug, which was right before it had been withdrawn from the market. Louise was born as one of 550 thalidomide babies in Britain who survived longer than a few months.

Along with the physical birth defects on babies, thalidomide had a second overlooked effect: emotional isolation. Many thalidomide children felt isolated in society due to looking different from others, with some children being rejected by their parents or even institutionalized. “I never got the chance to bond with my parents and I’m sure that has been detrimental to our relationship and how we function now,” said Louise (Mcgrath, 2014). Due to doctors’ advice, which was later disproved, Louise’s father was convinced to send Louise away to residential care for her entire childhood, away from her entire family. She stayed at the Chailey Heritage, a home for children with disabilities at just 5 weeks old. She left at 17.

The journey to unraveling the drug case started in 1960 when pharmacologist Dr. Francis Oldam Kelsey, working at the Food and Drug Administration, was shocked to see the lack of scientific support for thalidomide’s use. In 1961, she made public thalidomide’s link to birth defects and pushed for the drug’s removal. The company Grünenthal tried to blame the birth defects on other reasons including abortions and nuclear fallout and only finally apologized in recent years  (Winerip, 2013). Due to Dr. Kelsey’s hard work, thalidomide was banned worldwide in 1962 and never received approval. Louise’s father, David, furthered a legal battle from 1962 to 1963, against the company Distillers, on the side of all families who have been harmed by the use of thalidomide. His work forced the company to take responsibility for a public scandal and as well led to a settlement fund of 26 million pounds to compensate the families affected.

Along with the fight of thalidomide parents and Dr. Kelsey’s research, harmful birth defects could not have been revealed without the sacrifice of one woman’s cells: Henrietta Lacks. Henrietta Lacks was an African American woman who dealt with cervical cancer and was receiving radium treatment from Dr. Geroge Gey, a cancer researcher. Upon analyzing Lacks’ cells, he realized that her cells were different from most cells because most cells die; however, Lacks’ cells were “immortal” since they kept dividing every 20-24 hours. Dr. Gey took her cells, without Henrietta’s knowledge, for scientific research, meanwhile Henrietta died of a tumor (John Hopkins, 2024). There were many ethical issues in the use of Lacks’ cells including lack of consent, privacy violations, lack of knowledge from the family and how the doctors had harvested her cells to use for their own scientific projects and their own benefit.  Lacks was forgotten from science but her cells became world famous since drugs, the military, polio vaccines and many scientific advancements were developed from her cells. This is similar to the injustice of thalidomide babies, as they too were neglected and forgotten, but their sacrifices paved the way for drug reform and exposing thalidmide’s effects. Henrietta received none of the recognition, with science profiting millions from her body, while preventing the truth from being spread. Additionally, the thalidomide children received no recognition when thalidomide profited from their bodies and neglected taking responsibility. The HeLa cells were used in experiments with thalidomide and HeLa cells were used to describe how the birth defects were caused from the drug activity. Her cells showed how thalidomide works, disproving its use in pregnancy, and were applied to see the thalidomide’s other functional uses towards other cancers like multiple myeloma. Thus, it is important to recognize her sacrifice as her cells continue to progress the health and scientific knowledge of the world today. Thalidomide and its impact is an issue for certain ethnic groups, especially those historically marginalized or subject to bias in medical research and treatment. Historically, marginalized communities have faced discrimination in medical research, as seen for Henrietta Lacks, and thalidomide further led to distrust and skepticism regarding pharmaceutical interventions.

The thalidomide scandal was significant to the beginning of drug reform for the FDA and enforcing more federal guidelines on pharmaceutical companies that continue to today. The sacrifices of thalidomide babies and Henrietta Lacks has brought attention to the enforcement of strict laws on drugs and scientific experiments to ensure safety of patients and consumers. However, thalidomide is still being used today. Scientists have found that the properties in thalidomide that prevent blood vessel growth can be used in cancer research attempting to treat multiple myeloma and tumors. While the thalidomide label puts restrictions on pregnant women from ingesting thalidomide, the drug is still used often in Brazil to treat leprosy and medical issues, with parents and children continuing to be disabled by its consequences. Thalidomide’s heartbreaking impacts emphasizes the need to evaluate thalidomide’s purpose because as Louise says, “Thalidomide has not only affected the survivors, it has affected the survivor’s siblings, their parents and their children. So you don’t just have a thalidomide baby – you have a thalidomide family” (McGrath, 2014).

References 

Botting, J.H.B. (2002) The History of Thalidomide [Bar Graph]. Open Edition Books. https://books.openedition.org/obp/1991 

Evans, E. H. (2014) Thalidomide: how men who blighted lives of thousands evaded justice [Photograph]. The Guardian. https://www.theguardian.com/society/2014/nov/14/-sp-thalidomide-pill-how-evaded-justice 

McGrath, N. (2014, August 1). My thalidomide family: Every time I went home I was a stranger. The Guardian. https://www.theguardian.com/lifeandstyle/2014/aug/01/thalidomide-louise-medus-a-stranger-when-i-went-home 

National Academy of Sciences. (2001) Henrietta Lacks [Photograph]. Britannica. https://www.britannica.com/biography/Henrietta-Lacks 

Fintel, B. Samaras, T Athena. Carias, E. (2009) The Thalidomide Tragedy: Lessons for Drug Safety and Regulation. Helix. https://www.helix.northwestern.edu/2009/07/28/the-thalidomide-tragedy-lessons-for-drug-safety-and-regulation/ 

Science Museum Group. (1971) Prosthetic/artificial limbs used by Tacey Baynam [Photograph]. Science Museum Group. https://collection.sciencemuseumgroup.org.uk/objects/co8594793 

The Legacy of Henrietta Lacks. (2024) John Hopkins Medicine. https://www.hopkinsmedicine.org/henrietta-lacks 

Thomas, K. (2020, March 23). The unseen survivors of thalidomide want to be heard. The New York Times. https://www.nytimes.com/2020/03/23/health/thalidomide-survivors-usa.html 

Winerip, M. (2013, September 23). The Death and Afterlife of Thalidomide. The New York Times. https://www.nytimes.com/2013/09/23/booming/the-death-and-afterlife-of-thalidomide.html