Fascinating science-meets-biography book about the life, and afterlife, of Henrietta Lacks, a poor African-American woman from Maryland who died of cervical cancer in 1951, but whose cancer cells were cultured for use in medical research and her HelLa cells are used by researchers worldwide.
Rebecca Skloot first follows her own fascination with the elusive Henrietta Lacks, but her 10 year investigation and writing of this book was spent mostly in the company of Henrietta’s daughter, Deborah who was only 4 when her mother died. As well as scientists and medical staff, we meet the extended Lacks family, and the book provides a real insight into the life of the poor in America and the African-American experience in particular.
Two of the key themes are the evolution of ethics relating to the use of human tissue/cells in medical research – particularly in the US where research is so commercialised and the profits from a successful outcome runs into the US$ Billions, none of which flows back the person from whom the original matter was taken – and the gradual emergence of the requirement for informed consent.
And, putting her money where her mouth is, Rebecca Skloot established The Henrietta Lacks Foundation when she published her book, which went on to be a best seller in the US. The Foundation’s mission is:
Helping individuals who have made important contributions to scientific research without personally benefiting from those contributions, particularly those used in research without their knowledge or consent.