HeLa again at the frontier of medical privacy
I was just reading a fascinating piece that made me aware of a book and case I need to be more informed about:
On Twitter I was discussing the latest insult to the family of Henrietta Lacks, the woman whose cancer cells are still an important laboratory tool long after her death. The ethics here are fuzzy to some, so we’ll break it down.
Several decades ago, an African American woman in Baltimore (the South, recall) was being treated for cervical cancer. I have little doubt that the doctors who cared for her were trying to do good. At the time, medicine was very paternalistic; there was no need to explain much to a patient. If they came for help, you as the doctor did what you thought best. There was little need for further input from the patient.
Her treatment was painful and ultimately unsuccessful, but the cells the doctors kept from her cancer became the nidus for a revolution in cell biology and research. Mrs. Lacks and her family were told nothing about this; she hastily signed a general consent, which was consistent with the ethics of the time. The decision to harvest her cells without her consent sent a wave of grief and mistrust through her family that has crossed decades.
Read more on ACP Internist. The book, by Rebecca Skloot, is The Immortal Life of Henrietta Lacks.