The Division of Diversity and Inclusion at UMKC collaborated with UMKC Libraries and the School of Medicine to hold its 5th annual Social Justice Book Lecture Thursday, Nov. 13, in Pierson Auditorium.
The Lecture featured “The Immortal Life of Henrietta Lacks,” a non-fiction book by bestselling author Rebecca SklootThe book centers around a poor, black woman living with cancer in the 1950s. After she sought treatment at Johns Hopkins Hospital, a nurse took a sample of her tumor and sent it elsewhere in the building, to a man named George Guy, for research. Guy was the head of tissue culture research at Johns Hopkins. Unlike previous samples from other patients, Lacks’ cells grew rapidly. Now known as HeLa cells, they were then sent around the world for research. Lacks and her family did not know about this. The social injustice in this matter is that her cells were being used for research without permission, regardless of the intent to positively impact peoples’ lives.
Susan Wilson, Vice Chancellor of the Division of Diversity and Inclusion, started the book lecture.
“In this book, Ms. Skloot pricks our consciousness and forces us to consider issues of race, class and medical ethics,” Wilson said.
The Reach Healthcare Foundation was a partner in the event. Dr. William Moore, Vice President of Program and Evaluation for the foundation, was present at the book lecture.
“Dr. Moore is the principal architect of the Reach Foundation’s Rural Health Initiative, designed to improve access to care in three rural counties in Kansas and Missouri,” Wilson said. “Dr. Moore has spent the entirety of his career working with and for children and families who are reliant on the systems of care and education that are often substandard and, at their worst, inequitable and damaging.”
Moore spoke about the book.
“It [‘The Immortal Life of Henrietta Lacks’] was frustrating, disappointing, heartbreaking and in so many ways, powerful,” Moore said. “It tells the story in lessons that we all can benefit about how individuals living in poverty intersect with their healthcare systems.”
Moore then introduced Skloot, who began by talking about how Lacks’ cells were distributed around the world.
“George Guy, along with scientists all around the world, had been trying to grow human cells outside the body, and it had never worked. … For reasons that remain a mystery until recently, Henrietta’s cells never died,” Skloot said.
Skloot said that Guy contacted other scientists to let them know what was happening with Lacks’ cells. The other scientists asked for samples to grow in their own laboratories.
“George Guy would send these vials of HeLa cells. … [He] would go to airports and find a flight attendant or pilot that would be going to whatever town the cells needed to go to,” Skloot said.
Guy would ask them to take the vials with them. At the other end of the flight, scientists would be waiting to collect the samples.
The number of cells created total about 35 metric tons.
Skloot talked about how Lacks’ family did not know about the cells being used around the world. The family was contacted about a decade later to find more information on the cells. The scientist that first contacted the family wanted to test Lacks’ children to see if they had the same cancer that she had. The family was confused, especially due to their lack of scientific understanding.
“David Lacks [Henrietta Lacks’ husband] and all of his children just didn’t have a basic education. His kids were deaf and hard of hearing, and their teachers never realized it. So they went through all of school without really learning the lessons that they were being taught,” Skloot said. “But they also didn’t really grow up in a culture where it was okay to ask a lot of questions, particularly to people that were in authority.”
Skloot mentioned that a few months before the scientists contacted the Lacks family, the Tuskegee syphilis studies had hit the press.
“This was one of the most unethical research studies ever done in the United States. Hundreds of black men who had syphilis were studied to see how syphilis killed you. They weren’t treated even though treatment was available,” Skloot said.
This was the largest social injustice topic of the time. David Lacks considered everything that was happening with these syphilis studies and connected them with the scientists wanting samples of his children’s DNA. Thus, David Lacks originally thought his children were being preventively tested for cancer.
Soon enough, David Lacks and his children realized that researchers just wanted more samples to get a better understanding of HeLa cells. This is the point when people begin to question whether it is ethical to be using Henrietta Lacks’ cells for the world to benefit, or if they should have received permission from her or her family first.
This is a tough topic for the Lacks family, especially because they are deeply spiritual. Keeping her cells alive makes them believe that she is not resting in peace.
The book lecture ended with a question-and-answer session and a book signing.