“Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells—taken without her knowledge in 1951—became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, in vitro fertilization, and more. Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can’t afford health insurance.”
I laughed and cried; I got angry. Henrietta’s story, her daughter’s journey, touched my heart. The trauma of such widespread use of Henrietta’s tissue, and news reports proclaiming genetic mutants being created from them … her family’s knowledge and concerns; what they might understand or not, were not even on the scientists’ radar, but affected every part of her children’s lives.
One of the most touching chapters concerns Christoph Lengauer (Johns Hopkins researcher) exhibiting such compassion and honesty in bringing Deborah & Zakariyya (two of Henrietta’s grown children) into the research facility and showing them their mother’s cells under a microscope, and giving them a large, framed photo of them. He showed them loving patience and respect while teaching them about their mother’s contribution to medical research.
The debate at the end of the book about ethical issues surrounding tissue ownership and informed consent had me going back and forth depending upon the viewpoint. In the end, it became clear for me: Yes to informed consent. No to defining the research allowed with your tissue. Yes to some system of royalty payments to the donor. Had Henrietta’s family been paid with quality healthcare, Deborah would be alive today.