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?
Skloot frames Lacks’ story within historical contexts in both medicine and racism during the 20th century and in particular highlights the intersections of both – using examples of the Tuskegee syphilis study and the Nazi experiments on Jewish persons. While the horrific medical crimes committed against Jewish prisoners are fairly known, I am always surprised at how often Americans are unaware of the Tuskegee study. Most people are also unaware of the recent institution of human subjects protection and obtaining consent from research participants that have developed only since the 1970s. For this reason, I am glad that Lacks’ story has been revealed.
However, there were many times when I was really upset by the author and felt she was actually exploiting Lacks’ family. Skloot hounded the family over the course of years in her attempt to get “their side” of the story. She reveals a lot of very personal information about a family that has repeatedly discussed how much everyone was using them for their own gain. Skloot purpots to have undertaken this to honor Lacks, but sometimes the book reads as if it is actually Skloot’s own agenda driving the process. I found much of Skloot’s descriptions of the Lacks family to be fairly negative and caricature-like. Often, while reading the book, I found myself remarking on how strong and resilient this family was, despite all the negative things that were put on the page. I kept thinking about how much *certain* white readers would have all their stereotypes and biases against poor, Southern African Americans validated through this story. In addition, participating in Skloot’s research negatively affected Lacks’ daughter Debra’s health and well being.
Research often exploits the most vulnerable. Social science research in particular is often aimed at improving the human condition and as a result those who have difficulties are the ones studied. Medical science is aimed at improving the health of people and thus, those who are sick are often the ones studied. This is where researchers must be very cautious and very ethical in their research design and methodologies. We need to balance our desire to know how to understand or change the human condition with compassion and respect and ensure that those who participate in human subject research do so with full information and understanding – even if it means we don’t get the perfect research results we desired.
If Skloot has brought national attention to a discussion about research ethics, human subject protection and informed consent, that is good. Was it worth it at the expense of the Lacks family? I’m not so sure. Henrietta Lacks, if Skloot’s research is correct, was an intensely private person. Just as her cells were taken without her knowledge and consent and replicated for the benefit of society, so was her whole life and death and beyond. It’s clear that Skloot wanted the world to know that a real person existed behind the cells that changed the course of medicine in the United States. But in the end, it’s a question who’s voice is really telling the story.