UAMS Students Get Memorable Lesson in Health Care Ethics

Sonny Lacks and his daughter, Jeri Lacks-Whye (far left) and third-year pharmacy students (from left to right) Taylor Hamilton, Marlene Battle and Iddy Mugambi. 

Adapted from a story by UAMS College of Pharmacy students
Iddy Mugambi, Marlene Battle, and Taylor Hamilton

When HeLa cells were discovered, researchers were given a tool that would transform biomedical research. What they did not have was the consent of the woman from whose body the cells were taken.

Born in Virginia in 1920, Henrietta Lacks was only 31 years old when cervical cancer claimed her life. Although she has been dead for more than 60 years, her “immortal” cells have influenced research and medical breakthroughs in ways no one could have predicted. Curiosity about these cells – known as HeLa cells – and where they originated is what led journalist Rebecca Skloot on a years-long quest to uncover the story of Lacks and find answers to ethical questions her unknowing contribution to science raise. 

A poor black tobacco farmer from Virginia, Lacks was diagnosed with cancer at 30. While being treated at Johns Hopkins Hospital in Baltimore, some of her cancer cells were removed, taken to a lab and put in test tubes where they inexplicably began to multiple at a surprising rate. Until this point, no one had been able to keep human cells alive for more than a few days. Scientists quickly realized they had the first “immortal” cells and began disseminating them to laboratories across the country – and ultimately around the world – for research purposes.

Skloot, along with members of the Lacks family, visited UAMS last October to speak about her best-selling book, The Immortal Life of Henrietta Lacks. Joining Skloot were Lacks’ son, David “Sonny” Lacks, and his daughter Jeri Lacks-Whye.

Several students were lucky enough to visit with members of the Lacks family at a special luncheon. They say that Skloot’s lecture and luncheon meeting inspired them to see their role as biomedical researcher and or future health professional in a new light.

“The lecture and the whole experience makes me think that things I and others do on a daily basis may become monotonous, but really do have the capacity to impact lives in a major way,” Jacyln Daniels, a fourth-year student in the Graduate School, said. “Meeting her family forced me not to take HeLa cells for granted, but to appreciate the sacrifices that were made to allow me to work with them and other immortalized cell types. It was great to hear the story from different perspectives, and it served to stress the importance of ethical practices in what I do both now and in the future.” 

The experience also changed thinking on how care is delivered, said Gwendolyn Carter, a Ph.D. candidate in her fourth year of studies in neurology and developmental sciences in the Graduate School.

“I was reminded that when a person has a medical condition, it affects more than just the individual,” Carter said. “Their family comprises a support system that walks the patient through their disease and has to handle any fallout after the disease has taken its course. Part of our responsibility as caregivers is to make sure that the family understands the process and how to handle situations when they arrive.”

For pharmacy students, the event was the culmination of a learning process that started with reading Skloot’s book. Last year it was required reading for all students in the first three years of the program, in core classes as well as a law and ethics course.

“The book is an excellent tool in getting students to think about pharmacy from the standpoint of ethical dilemmas and from a health literacy angle in how to better communicate with patients,” Kendrea Jones, Pharm.D. assistant professor of Pharmacy Practice and advisor to the UAMS chapter of the Student National Pharmacy Association, said. “It’s proven to be a great conversation piece that opens many doors to being more efficient in our profession.”

“Having lunch with the Lacks family provided a personal touch to a story that changed scientific history while uncovering the injustices transcended to get to that accomplishment,” said Iddy Mugambi, a 2014 Pharm.D. candidate. “The whole experience catered to a new focal point in my progression through the rest of my curriculum. What good am I to the pharmacy field if I am not able to promote a need for improvement of social and health outcomes in my own community?”

At the time of her death, about six months after her cancer diagnosis, Lacks had no idea that her cells were being used in research or that they would impact medical discoveries for the unforeseen future.

While the fact that Lacks never gave consent for her cells to be used in research may seem to breach today’s ethical standards, the practice was commonplace in the 1950s. The ethical “heart of the story” came into play in the 1970s, when researchers contacted the Lacks family for the purpose of engaging them in related research. It was then that the family first learned about the cells’ existence and the fact that they were being sold for profit.

“Learning about the life of Henrietta Lacks has truly been an inspiration to me personally and very motivational to my future career as a pharmacist,” said Marlene Battle, a 2014 Pharm.D. candidate. “As an upcoming pharmacist, it is my desire to have a positive impact on the lives of the community by providing outstanding services, especially within the minority populations. Interacting with Henrietta’s son and granddaughter brought the words from the pages of the book to life.”

The opportunity to speak with members of the Lacks family wasn’t all business, attested H. Otis Tyler, M.S., now retired assistant dean for diversity at the UAMS College of Pharmacy/Center for Diversity Affairs.

“I was able to ask Sonny if his family grew ‘shade’ tobacco as opposed to ‘sun’ tobacco,” Tyler said. “After a big smile and a laugh, he was surprised at a question for growing tobacco, but he said they grew ‘sun’ tobacco and proceeded to explain the differences in the two processes. It was a real pleasurable experience to speak with them.”