PXE Awareness
Volume 17, Issue 3 November 2011
Must Reading
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By Fran Benham The Immortal Life of Henrietta Lacks by Rebecca Skloot should be read by all who have inherited a genetic disorder. Skloot spent over a decade in its preparation. She came to know the Lacks family not just as subjects of a remarkable breakthrough in biomedical research, but as friends with a compelling story but without the tools to share it. She tells their story with accuracy and compassion and as background for the story of research using Henrietta’s cells and tissues. No-one could have foreseen how physicians, using the bits, scraps and blood left with them by Henrietta, would create multi-millions in profits for biotech businesses. They could only hope for the cures, such as that for polio and treatments for so many ailments, ranging from cancers to numerous viruses that were made possible thanks to her cells. Researchers had tried without success for decades to keep cells alive in their labs. If this could be done, research not otherwise possible, could begin. Henrietta Lacks, born in 1920, mother of ten, a poverty stricken colored tobacco farmer, provided tumor cells from the terrible cancer that killed her at age 31. Her cells grew and grew and grow today in labs around the globe, estimated mow to be more than fifty million metric tons of HELA cells. Henrietta’s family came to believe she is still alive in those cells, some sixty years after they buried her. They were named HELA cells in her honor while her real name was forgotten. HELA cells were cultured without permission. Twenty years later the family learned that Henrietta’s cells had sparked a tremendously profitable revolution in biomedical research while the Lacks could not afford basic medical care. The Lacks story, especially that of Henrietta, is told through her daughter, Deborah’s struggle to know her mother who died when Deborah was only two. When Henrietta died, Deborah’s father took his large family home to Clover, Virginia and parceled them among relatives. Deborah was raised by her grandfather in the log cabin of their slave ancestors. Her lack of education and opportunity in a demeaning culture reminds us of a dark chapter of our own national story, still in need of correction. Deborah wanted nothing more than for her mother to be recognized for her great contribution to the health of humanity. So yes, Rebecca Skloot tells a powerful true story of race and class, and she does much more. We learn from her of the role of consent in all its complexity when patients are given the choice to decide if their blood and cells left with doctors can be used for research. Skloot provides fodder for issues widely discussed today: patenting of human genes and commercial uses of the results of biomedical research. It is quite possible that these matters may soon become election issues. We who live with a genetic disorder need to develop informed positions for decisions which may become law. Rebecca Skloot has provided us with much to think about. It is a great book to read and consider with friends. Those who are patrons of the National Library Service for the Blind and Physically Handicapped can download this book, DB70661, or order it though their state library service for the blind and visually impaired |