Book Review: The Immortal Life of Henrietta Lacks by Rebecca Skloot

Most of the book reviews I've posted here are young adult or at least fiction, so this is a special departure timely for Black History Month. My workplace hosted a book discussion of The Immortal Life of Henrietta Lacks, an important book that weaves cancer research history with the endearing struggle of a poor black family that had no idea of the widespread influence of their mother's cancer cells.

Henrietta Lacks died of cancer in the 1950s, leaving five children behind. Before she died, a doctor removed cancerous cells to study in a lab without her consent - a common practice until recently. Those cells spawned a revolution in research and led to developing the polio vaccine. Henrietta's cells did wonderful things for the world, but her health records were released and published in medical journals without consent from the family. Medical tech companies profiited from mass producing her cells to sell to labs for research; her family never saw a dime from it, because for 25 years they didn't know it was even happening.  Another twenty years of misinformation followed. Her family lived in poverty and ignorance about much of the science surrounding their mother until Rebecca Skloot started poking around to get the real story and put the pieces together.

The author spent over 10 years writing the book. She conducted extensive research to pull out facts the science textbooks and newspaper articles missed. It took years for her to gain the trust of the family, who had been lied to, ignored and abused by the medical community. The book honors the family while not sugar-coating the anger they felt, or the illiteracy that contributed to much of the misunderstandings about Henrietta. It does not make excuses for the doctors that behaved irresponsibly, but the information is simply presented for the reader to make his or her own judgement. Much of the ethical misjudgement existed in a time when there were no set guidelines for lab research, and no laws to protect patient rights. There was little oversight in the health industry in general.

I work in the health care field and found this a fascinating read on patient rights; to see it through the eyes of a suffering family changed the tone from a historical account to an issue that we still need action on today. All those privacy agreements you sign at the doctors office derived from HIPPA, which was only established 15 years ago. Before that there was literally no formal oversight to protect your health information. Framing patient consent and medical ethics in this very real story gives light to how necessary it is for healthcare regulation. The author handles the human interest side of this so expertly, it's almost like a novel woven into a non-fiction account of medical history.