After a few people mentioned a particular New York Times bestseller to me recently, I decided to read The Immortal Life of Henrietta Lack. While the story itself was interesting, there is a lot of material here that could be used in research methods and ethics classes. A few thoughts about the book:
1. The story is split into two narratives. One is about both the progress science has made with a Lack’s cells but also the struggle of her family to understand what actually has been done with her cells. The story of scientific progress is unmistakable: we have come a long way in identifying and curing some diseases in the last sixty years. (This narrative reminded me of the book The Emperor of All Maladies.)
2. The second narrative is about the personal side of scientific research and how patients and relatives interpret what is going on. The author initially finds that the Lacks know very little about how their sister or mother’s cells have been used. These problems are compounded by race, class, and educational differences between the Lacks and the doctors utilizing Henrietta’s cells. In my opinion, this aspect is understated in this book. At the least, this is a reminder about how inequality can affect health care. But I think this personal narrative is the best part of the book. When I talk in class about the reasons for Institutional Review Boards, informed consent, and ethics, students often wonder how much social science research can really harm people. As this book discusses, there are some moments in relatively recent history that we would agree were atrocious: Nazi experiments, the Tuskegee experiments, experiments in Guatemala, and so on. Going beyond those egregious cases, this book illustrates the kind of mental and social harm that can result from research even if using Henrietta’s cells never physically harmed the Lacks. I’m thinking about using some sections of this narrative in class to illustrate what could happen; even if new research appears to be safe, we have to make sure we are protecting our research subjects.
3. This book reminded me of the occasional paternalistic side of the medical field. This book seems to suggest this isn’t just an artifact of the 1950s or a racial division; doctors appear slow in addressing concerns some people might have about the use of human tissue in research. I realize that there is a lot at stake here: the afterward of the book makes clear how difficult it would be to regulate this all and how this might severely limit needed medical research. At the same time, doctors and other medical professionals could go further in explaining the processes and the possible outcomes to patients. Perhaps this is why the MCAT is moving toward involving more sociology and psychology.
4. There is room here to contrast the discussions about using body tissue for research and online privacy. In both cases, a person is giving up something personal. Are people more disturbed by their tissue being used or their personal information being used and sold online?
All in all, this book discusses both scientific breakthroughs, how patients can be hurt by the system, and a number of ethical issues that have yet to be resolved.