Family Shares Stories of Henrietta Lacks and HeLa Cells at Convocation
Published on 06 September 2013
The profound impact that Henrietta Lacks’ life, death, and “HeLa” cell celebrity has had on her family could be heard in a Convocation presentation given by Lacks’ daughter-in-law, Shirley Lacks, and great-granddaughter, Veronica Spencer. The two spoke on Thursday, Sept. 5 to hundreds of people in the Edward P. Newman Education Center adjacent to the STLCOP campus.
The Convocation marked the conclusion to this year’s STLCOP Summer Readers Program (SSRP), in which several hundred students, faculty, and staff read and discussed author Rebecca Skloot’s best-selling book, The Immortal Life of Henrietta Lacks, which documents the Lacks family’s mission to claim their rightful ownership of Henrietta’s life-saving “HeLa” cells.
Henrietta was a working-class mother of five who died in 1951 of a cancer that, ironically, helped give birth to the modern biomedical industry, enabling the development of a whole host of new treatments, ranging from the polio vaccine to AIDS medications–but all without the knowledge or consent of Henrietta or her family. “Skloot’s book raises far-reaching questions about the goals and ethics of medical research and about patient rights in the era of human genome-mapping,” says Brian Walter, associate professor of English and director of Convocations.
Shirley Lacks was best friends in high school with Deborah Lacks, Henrietta’s daughter, who, along with Skloot, helped spearhead the mission to claim ownership of Henrietta’s “HeLa” cells. Shirley talked about Deborah and Skloot’s trials and tribulations in getting the Lacks family recognized for their contribution to the biomedical industry and about the relationship that Skloot has with the family as a whole. Veronica Spencer spoke of carrying out Henrietta’s legacy as a registered nurse, mentor in Johns Hopkins University’s Dunbar Scholars program, and active member of the Henrietta Lacks Foundation, a nonprofit founded by Skloot that has so far awarded grants for college tuition and textbooks, medical and dental aid, and other emergency needs to Henrietta’s descendants.
Shirley and Spencer wrapped up the presentation by answering questions from the audience. One question asked how they felt about the National Institute of Health’s recent agreement with the family. Under the new agreement, Lack's genome data will be accessible only to those who apply for and are granted permission. Two representatives of the Lacks family will serve on the NIH group responsible for reviewing biomedical researchers’ applications for controlled access to “HeLa” cells. Additionally, any researchers who use that data will be asked to include an acknowledgement to the Lacks family in their publications, according to an article by NBC News Contributor Art Caplan, Ph.D. Spencer said she was satisfied with the agreement and that it was long overdue.
Before the presentation, Walter hosted a meet and greet with Shirley and Spencer during which dozens of STLCOP students, faculty, and staff had their books signed.