Whose voice is telling the story?

Last week I finished reading The Immortal Life of Henrietta Lacks by Rebecca Skloot. I first heard about the book when I saw Skloot on the Colbert Report and what intrigued me most was not the science behind the story but that the cells that had gone on to impact medical science in such immeasurable ways had been taken without Lack’s knowledge and the development of ethical standards for conducting research.
Without giving away too much of the story (although most of it is now widely known) here are my thoughts. For the most part, the story is told in a compelling way, starting with the author’s imagined scenario of Henrietta’s visit to Johns Hopkins to have a”knot” checked out. Skloot tells the story of Henrietta and the impact of her cells on medical science while alternating between her history, her children’s stories, and those who played a key role in how her cells were used in medical research.

Several pages into the section of the story where author Skloot delves into Lacks’ history, I began to feel uncomfortable. Skloot discusses her methodology for creating imagined scenes based on interviews with those who knew Henrietta and extensive research but I was still uneasy about how Lacks was characterized. While I imagine that Skloot was attempting to bring Henrietta out of the shadows, so to speak, and humanize the person whose cells had been unacknowledged for so long, it seemed contrived and – exactly what Skloot didn’t want to do – exploitative.

To me, the real gem of this book is that Skloot makes public the way research involving humans has often been unethical. I took a fascinating course about moral and ethical dilemmas in family decision making a few years ago, and many of the issues Skloot brings to the surface in her book we discussed in this class; questions about who owns human tissue once it’s no longer attached to the person? When does an individual’s concerns about biomedical ethics supersede the greater good for all? Should important decisions be made by others if a person is deemed not competent or knowledgeable enough to make that decision when it comes to their health and medical procedures? Continue reading “Whose voice is telling the story?”