Blood Matters by Masha Gessen is what I imagine you would get if you were to immerse yourself in the inner monologue of a fact-obsessed individual’s decision-making process. The book opens with Gessen learning their mother has died of breast cancer, followed by a jump in time to Gessen getting a positive BRCA1 mutation test result. These two events set the tone for the book in which Gessen examines through the past and present lens how genetics, and our knowledge of our own genetics, has shaped how we view ourselves, the world, and our connections to each other. In doing so, Gessen lends a perspective not often seen in journalistic or scientific writing — the Jewish one. As readers, we get to learn about scientific concepts in the frame of Jewish history and anecdotes, as well as how these concepts and the ideologies born from them have reverberated through history. For me, Gessen’s need to know all the facts before making a life-changing medical decision was extremely relatable, and I think many others will find it easy to empathize with Gessen’s experience(s).
As a genetics researcher, the first thing I think of when I hear “cancer genetics” and “Jewish population” is the BRCA1 founder mutation in Ashkenazis. But beyond that, I don’t have much of a background about how Jewish people fit into the scientific/medical world and its history. And for the most part, that’s largely because of how medical and scientific history is recounted; often leaving out the stories and perspectives of Jewish people. Here, Gessen uses the Jewish perspective and anecdotes to explain otherwise tricky scientific concepts. By describing disorders like Tay-Sachs and Niemann-Pick that are common to Jewish people, readers can better contextualize ideas that are abstract to most people like recessive vs. dominant disorders and genetic drift. Gessen also brings up an interesting point when it comes to this seemingly modern field, which is that it is also rooted in the past. We can understand so much of ourselves by looking at our DNA. We can learn who our ancestors were and how their legacy (DNA and its mutations) impact us going into the future.
The other prominent thread that runs through this book is the question “How does someone make a life-changing medical decision?”. What do you do when you aren’t necessarily a science-y person, but you have to use the information provided to you to make a big decision? For Gessen that involved talking to experts in different fields: a psychologist, an economist, and a doctor that pioneered how we view hereditary cancers. Gessen dissects all the aspects provided by these experts to create a comprehensive cost-benefit analysis. What else are you meant to do when you are in the limbo state that Gessen dubs “ill until proven healthy” which plagues cancer-associated mutation carriers? Perhaps most interestingly, Gessen also interviewed different groups of “at-risk” people (families with cancer running rampant, families with Huntington’s, etc.) to understand how they dealt with the (sometimes damning) knowledge of a genetic test result. It makes you consider 1) would you get tested if there was a chance you might be positive for some disease/disorder that may or may not be curable, and 2) if you are positive, what will you do with that information?
It might not seem like it with how ever-present it is in the news/the world today, but the medical genetics field is a relatively new one in the grand scheme of biology. As such, we’re still learning how to navigate it and the knowledge we gain about individuals and groups of people. And just like with most information, we need to be careful with how we use it. This is especially true of the medical genetics field whose history includes immensely problematic eugenics practices and ideas. This has led to health professionals relying upon “non-directive counseling” in which they try to describe all of the research to patients, walking a fine line between providing informed guidance and provoking unintentional frustration (on the patient’s side). In the end, Gessen said it best “To separate the knowledge effectively from the collective behavior, we must take it in small doses: apply it to individuals and not groups. Once it is used to generalize and create population-wide policies, the risks skyrocket.”