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Campus Read: “The Immortal Life of Henrietta Lacks”

Rebecca Skloot first learned about HeLa cells in 1988 when she enrolled in a community college biology class after failing her freshman year in high school. She was intrigued by the story of Henrietta Lacks, a black woman who died of cervical cancer in 1951. Without the patient’s knowledge, or that of her family, cells were taken from a cancerous mass and cultivated in a lab.

Unlike previous cell samples, these not only survived, but thrived and have become part of a multi-million dollar research industry: scientists estimate that her “immortal” cultivated cancer cells collectively would weight more than 50 million metric tons and if arranged end to end would wrap around the world at least three times.

Henrietta Lacks stood only a little over five feet in height. To this day her family continues to live in poverty, unable to afford health insurance.

For an inaugural Campus Read, the University of Wisconsin –Platteville chose Rebecca Skloot’s best-selling The Immortal Life of Henrietta Lacks, a book that not only retells the story of the exploited black woman and her family, but explores the medical, ethical, moral, legal, financial and racial issues inherent in the immortality of the cells. This fall every freshman at UW–Platteville was given a copy of the book; professors were encouraged to incorporate the text in their curricula.

The college freshmen asked to read the book are not much older than Skloot when she first learned of the Henrietta Lacks cells. Now an award-winning science writer, Skloot’s research for writing her book included many hours of interviews with Lacks’s relatives and with members of the medical/science community. The result is an investigative work that reads like a novel but offers an accessible scientific explanation of cell research, including implications both for medical advances and ethical violations.

Freshmen composition students in this writer’s classes were asked to read the book, and after class discussions, to compose an essay that dealt with the exploitation of Henrietta Lacks’s “immortality.”

Freshman Kari Thompson felt that while Lacks had signed a form agreeing to necessary procedures, “the doctors did not have her consent to take her cells and sell them to scientists around the world.” She added, “I would be extremely upset if someone took my mother’s cells…without me or my family knowing what was really going on.”

Because doctors never thoroughly explained the consent form, “she assumed the doctors were going to do what was best for her and would not take advantage of her,” Katie Rogers noted. Among other things, they never told Lacks that the radiation treatments would make her infertile.

“Her cells never should have been taken without her permission,” Teisha Grundahl wrote. “We cannot take from one person to heal another and call it ethical…It’s like the Nazis using Jewish people as lab rats in experiments to try to help another group of people.”

Ben Bejvan was disturbed to read about the Tuskegee syphilis study in the book, the historical fact that black men had been used as unwitting victims in an experiment that sometimes led to their deaths. “We can and should do our best to minimize the tension between different ethnicities and help repay for some of the wrongs committed in the past,” he stated.

If asked, the family would probably have given their consent, Rima Minazetdinova said, because the cells were used for a good cause. “When my sister had heart surgery, my parents gave their consent which allowed a doctor to take a tissue sample during surgery for research.” Minazetdinova hoped that her “sister could contribute to science, and maybe the research would help other children with heart diseases.”

Many students were cynical after reading the book. “Henrietta Lacks was more important to researchers as HeLa [the name given to her cells] than as a patient,” said Ashley Spease. And Zack Iverson, noting the high costs of medical care, quipped “it becomes easier to realize why doctors wear masks. I wouldn’t want to show my identity either.”

For a thought provoking read, consider The Immortal Life of Henrietta Lacks by Rebecca Skloot, Broadway Paperbacks (division of Random House), 2010, 2011.

Retired Gibraltar High School English instructor and freelance writer Gary Jones teaches the freshmen English class at UW-Platteville he took fifty years ago. He met his wife Lu on campus during their senior year.