The Lacks Family has enthralled university and library audiences across the country talking about their mother, grandmother and great-grandmother, Henrietta Lacks, and her important contribution to science. The international success of Rebecca Skloot’s New York Times bestseller, The Immortal Life of Henrietta Lacks, has left people keenly interested in the Lacks Family and Henrietta’s legacy. In their appearances, the family shares with audiences what it meant to find out—decades after the fact—that Henrietta’s cells were being used in laboratories around the world, bought and sold by the billions. The family’s visits put a personal face to big issues such as the dark history of experimentation on African-Americans, the birth of bioethics, and the legal battles over “informed consent” and whether we control the stuff we’re made of, and should share in the profits.
Henrietta Lacks was a poor black tobacco farmer whose cells, taken without her knowledge in 1951, went on to become the first immortal human cells ever grown in the laboratory. Those cells, nicknamed HeLa, became one of the most important tools in modern medicine, vital for developing the polio vaccine, cloning, gene mapping, in vitro fertilization, and more. Though Henrietta died in 1951, her cells—alive and growing to this day—are still the most widely used cell line in the world.
Henrietta’s family didn’t learn that the cells existed until the ‘70’s, when scientists wanted to do research on her children—Lawrence, Elsie, David “Sonny” Jr., Deborah, and Zakariyya—to learn more about the remarkable “immortality” of Henrietta’s cell line. Her children were then used in research without their consent, and without having their most basic questions about the cells answered, questions like, “What is a cell?” and “What does it mean that Henrietta’s cells are alive?” Henrietta’s cells have helped biotech companies make millions of dollars, yet her family has never benefited from the commercialization of HeLa cells.
In August 2013, 62 years after Henrietta’s death, the Lacks Family reached an historic and unprecedented agreement with the National Institutes of Health. After a German lab posted the full HeLa genome online for anyone to see, Henrietta’s descendants came together with the NIH to consider options for protecting the family’s privacy without hindering medical and scientific advancement. The result is the groundbreaking HeLa Genome Data Use Agreement. Under this agreement, two members of the family join representatives from the medical, scientific, and bioethics communities on a new panel that reviews research proposals for use of the full HeLa genome sequence data and grants permission on a case-by-case basis. According to NIH Director Dr. Francis Collins, this marks the next chapter in the Lacks family’s long contribution to the scientific community as “just like their matriarch, the Lacks family continues to have a significant impact on medical progress by providing access to an important scientific tool that researchers will use to study the cause and effect of many diseases with the goal of developing treatments.”
Despite what the Lacks Family has endured, they are proud to honor the memory of Henrietta and her unparalleled contributions to science; their message is positive, optimistic, and—above all—celebrates Henrietta’s life and legacy. They have visited over 100 communities and campuses, where their appearances give audiences a sincere first-person perspective on the collision between ethics, race and the commercialization of human tissue, and how the experience changed the Lacks family from generation to generation.
For more information on the Lacks family, please visit www.lacksfamily.net/