The Henrietta Lacks story is one that promotes discussion about consent in the medical field, race, class and the rights family have to information about their family member’s medical treatment. West Chester University held a presentation conducted by the Frederick Douglass Institute on Wednesday, Sept. 27 from 7 to 8 p.m. in the Emile K. Asplundh Concert Hall. The event was also sponsored by the Office of the President, Office of Social Equity, College of Health Sciences, College of Business and Public Management, College of Arts and Humanities, Undergraduate Studies & Student Support Services and SSI, Inc.
Lacks was an African American woman who died at 31 years old in 1951 of cervical cancer. Without her consent, doctors extracted cells from her tumor to use for research. These cells, referred to as HeLa cells, were the first cells to continue to divide long after they left the body. Where scientists only had a few days to research, these cells became the first immortalized cell line. These cells served to create advances in the medical field that led to the polio vaccine, cloning, gene mapping, cancer research, HIV/AIDS research, in vitro fertilization and more. Lacks’ family was not informed about the cells by the hospital until 25 years after her death when they wanted samples from her descendants for the purpose of differentiating HeLa cells with contaminated cells. At the time, the family was told the purpose was to see if her children had cancer.
The family has never received compensation from Johns Hopkins Hospital or the medical field at large. The hospital had changed the name attached to the cells to “Helen Lane” to keep Lacks’ identity secret. After the family was informed, the story was still largely unknown by the public. Author Rebecca Skloot worked with daughter, Deborah Lacks, as well as several other members of her family, and wrote about the Lacks story with the 2010 bestseller, “The Immortal Life of Henrietta Lacks.” Skloot then established the Henrietta Lacks Foundation which seeks, “to provide assistance to individuals and their families who have been directly impacted by [research conducted on individuals without their consent as well as] to promote public discourse concerning the role that contributions of biological materials play in scientific research and disease prevention, as well as issues related to consent, and disparities in access to health care and research benefits, particularly for minorities and underserved communities.”
In 2017, the book was turned into an HBO movie starring Hamilton’s Renée Elise Goldsberry, Oprah Winfrey, Rose Byrne and Courtney B. Vance. The film was nominated at the Primetime Emmy Awards for Outstanding Television Movie.
The event was moderated by English professor Bill Lalicker and featured Lacks’ great-granddaughter Veronica Robinson and Lacks’ daughter-in-law Shirley Lacks. Now Robinson serves on the board in the National Institutes of Health, NIH, which CNN said, “oversees the HeLa genome sequencing data.” CNN further says that she, “is the executive director of the Henrietta Lacks HeLa Legacy Foundation, which helps support families undergoing medical crises and hopes to someday open a museum.”
This presentation including detailing all that has been done since the book was released to honor Lacks. Examples were Lacks receiving an honorary doctorate from Morgan State University, a high school in Vancouver, Washington being named the Henrietta Lacks Health and Bioscience High School, “Hela High” and Baltimore honoring Henrietta Lacks for Black History Month.
After this both Robinson and Shirley sat down with Lalicker to respond to questions from the audience as well as questions previously submitted. When asked if Lacks knew how important her cells would be, did they think she would have consented to donating her cells, Shirley said, “I think she would have. The reason why I say that is because all the things that you learn about Henrietta is that she was a very giving person. She loved people and she loved to help people.”
When asked what they found to be the most surprising use of HeLa cells, Robinson said, “I think polio [vaccine] and in vitro fertilization.” She said polio due to it being, “the AIDS epidemic of [her] aunt’s time” and in vitro fertilization because, “without it, a lot of women couldn’t be mothers.”
Both members of the Lacks family stayed after the event to sign copies of “The Immortal Life of Henrietta Lacks.”
Lalicker said this event was in the works for the past two years. The Frederick Douglas Institute, of which he is a board member, was a part of the committee that selected the book for its one-book project intended to cross disciplines. They selected, “The Immortal Life of Henrietta Lacks” because, he said, “it is a book that brings together so many important issues. It applies to so many disciplines. It’s matters of ethics, of gender, of race, of legality of medical science, it’s history, it’s everything. So,b so many different courses could use it and so many people on campus in the larger community with different interests could relate to that book.”
Lalicker further detailed that in the two years leading up to the event there was a lot of fundraising. These funds were used to give out about 400 free books to distribute to students in classes where the book was adopted. Lalicker says this was due largely in part to the contributions from the Office of Social Equity. He also says the Frederick Douglas Institute hopes to have a series of future events dedicated to the book and Henrietta Lacks through 2018.
When Lalicker was asked about what he hoped students took away from the event he said, “That people’s lives matter. That the life of every individual is a series of choices. Ethical choices. Choices about how we connect with the world [and] about how we deal with people. The doctors and nurses and researchers who dealt with Henrietta Lacks had a series of ethical choices to make. Henrietta Lacks herself had a series of choices to make and that her family again had to say, ‘what’s the best way I can make decisions that help me to be the kind of person I should be in the world and makes the world better and not worse?’ That sense of the importance of every individual and the choices we make is something that I think is the essence of wisdom . . . I hope that’s something we’re learning at the university.”
Lalicker can be reached at WLalicker@wcupa.edu. The Frederick Douglass Institute can be reached at firstname.lastname@example.org. Copies of the book are available on Amazon and eBay and the movie is available on HBO.
Halle Nelson is a fourth-year student majoring in communication studies with minors in English literature and deaf studies. She can be reached at HN824858@wcupa.edu and on Twitter @Halle_N_Nelson.