![]() Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? And if her mother was so important to medicine, why couldn’t her children afford health insurance? ![]() Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family-especially Henrietta’s daughter Deborah, who was devastated to learn about her mother’s cells. As Rebecca Skloot so brilliantly shows, the story of the Lacks family - past and present - is inextricably connected to the history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. Now Rebecca Skloot takes us on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells from Henrietta’s small, dying hometown of Clover, Virginia - a land of wooden quarters for enslaved people, faith healings, and voodoo - to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. HeLa cells were vital for developing the polio vaccine uncovered secrets of cancer, viruses, and the atom bomb’s effects helped lead to important advances like in vitro fertilization, cloning, and gene mapping and have been bought and sold by the billions. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons-as much as a hundred Empire State Buildings. The first “immortal” human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. She was a poor Southern tobacco farmer who worked the same land as her enslaved ancestors, yet her cells-taken without her knowledge-became one of the most important tools in medicine. The summit provided recommendations and suggested strategies for future initiatives designed to increase the representation of minority individuals in dermatology clinical trials.Her name was Henrietta Lacks, but scientists know her as HeLa. ![]() The program hosted thought-provoking panel talks and discussions with various stakeholder groups, including a keynote presentation from the family of Henrietta Lacks.Ĭonclusions and Relevance Panel discussions and insightful presentations from physicians, industry leaders, community trailblazers, and patients fostered new collaborations. Observations The summit focused on 3 principal areas: (1) understanding the current clinical trials landscape (2) breaking down patient, clinician, industry, and regulatory barriers and (3) effecting change through a diversity-focused strategy. The summit was an interactive and collaborative effort to advance discussions regarding the need for broader inclusion of racial and ethnic minority patients in dermatology clinical trials. The Skin of Color Society hosted the inaugural Meeting the Challenge Summit: Diversity in Dermatology Clinical Trials in Washington, DC, from June 10 to 11, 2022. ![]() A diverse participant pool in dermatology clinical trials is critical to ensure that results are generalizable among the patient population who will ultimately depend on the efficacy of the intervention. Importance Clinical trials remain the cornerstone for determining the safety and efficacy of an intervention. ![]()
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