Meanwhile, Lack's family struggled without her. Her children were young; the baby not even one when she died. The eldest languished forgotten in a mental institute with horrifying conditions. No one had any idea that Henrietta's cells lived on, providing benefits (and profits) to hundreds of scientists and millions of patients. HeLa cells were so robust that any contamination of other lines usually resulted in HeLa taking over completely, meaning that accidental contact destroyed several other lines years before anyone noticed. Researchers went back to the family for samples to help identify markers for HeLa to detect other contamination, but the Lacks family only understood they were being tested for their mother's cancer; when no follow up arrived they were left in suspense and fear.
Rebecca Skloot's interest lay in both the sample and the family -- in The Immortal Life of Henrietta Lacks">she traces both the path of the cells and the arc of the the Lacks family, from Henrietta's birth through the lives of her descendants. Poor, black, often uneducated, the family went years knowing nothing about HeLa, and then more years wondering why they saw no benefit from something so valuable their mother had given. Skloot gets in touch with Deborah Lacks, the surviving daughter, who was a toddler when her mother died. After slowly building trust, they search for more information together, Lacks wavering between paranoia that Skloot is another white usurper out to get more from the family and joy of learning more about her mother and her family. Together they uncover the fate of Deborah's older sister, and visit a lab to see HeLa cells dividing and thriving. Skloot ends with a discussion of the ethics of tissue samples, a field still confused and murky.
Although occasionally the book seemed unfocused, swerving between the often baroque troubles of Henrietta Lack's descendants and the varied uses of the millions of HeLa cells still growing, both threads held my interest, as a historical record of a huge advance and a sociological record of the prejudice against poor black patients. A.