It all started when Gessen’s mother died from breast cancer.
Breast cancer is one of the many inherited illnesses, which meant that Gessen herself might be carrying the same mutated gene that caused her mother to develop breast cancer (the same gene was also connected to ovarian cancer). It also meant that Gessen could, potentially, pass that same mutated gene along to her children.
Bravely, Gessen had herself tested, and learned that yes, she did have one of the two known mutated genes linked to a much higher risk of developing breast and ovarian cancer than women without the gene will ever face.
I would be too devastated by this news to do anything at all. Gessen, however, decided to write a book about her own, personal, quest to figure out what she should do. The full title of the book is Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene.
She was being treated at the hospital as a cancer patient, despite the fact that she was, at that moment, healthy, with no signs of cancer. Her doctors were indicating that the only way she could be certain that she would not develop cancer would be to have a double mastectomy and also a complete oophorectomy. In other words, remove everything that makes her female, and do it now, before the cancers start.
I found it interesting the methods she used to help her make her decisions. She considered her children’s needs (her daughter was still breast feeding at the time she got this news). Gessen did research on the gene she had. She questioned doctors. She spoke with families who also had a high prevalence of cancer, and asked more questions. She interviewed geneticists, women who had the operations she was considering, and even an economist. All had interesting, unexpected, and sometimes conflicting advice.
This all leads up to questions about genetics. In her book, Gessen focuses on specific groups of people who have been studied because of their higher than average potential for passing on inherited illness.
First, she talks about the Ashkenazi Jews (which she is one of). There are many inherited illnesses prevalent in this community, and Gessen does a masterful job of explaining not only what the diseases are, but also the genetics involved. Later in the book, she discusses the Amish, and the Mennonite groups, and the inherited illnesses found among each group.
Any discussion of genetics bring up questions, and Gessen talks about many in her book. There are the questions about ethics. Should embryos who show certain genetic conditions not be born? What conditions should we screen for, exactly? Should we consider only quality of life for the affected child, or should we also consider the burden the parents would face? It becomes tricky fast.
One cannot simply consider the genetic implications without considering the people involved, and the culture they are living in. Start talking about screening for certain genes, in the hopes of avoiding having those genes passed on to future generations, and you cannot help but remember Nazi Germany. The shadow of that evil still lingers over what is going in genetics today. What do we choose to test for, and why?
Another complication in dealing with humans is that not everyone is going to want to know what their genes hold. Some people, of course, will see family members dying of cancer and instantly run out and have themselves tested. Others, however, would rather not know for certain, for a variety of reasons. Gessen covers the psychology surrounding these decisions, and she pulls no punches.
Gessen covers a culture that I found really interesting, who test everyone in their group, but, never let the people know specifically what their genes hold. This group uses matchmaking to disallow two people who are carriers of genetically inherited diseases from marrying and passing things on. The two people simply find another match, and no one in the group is stigmatized for holding a mutated gene. For them, it works.
Towards the end of the book, Gessen looks at studies that were done on foxes and rats. Scientists were breeding some specifically to be domesticated, and others specifically to be aggressive, and studying the differences found in the genes of each group. More questions arise. How much of our behaviors, our personalities, are directly a result of our genes? Have we reached “the future”, where our identity is nothing more than what our genes hold?
I find genetics to be absolutely fascinating, and I could not put this book down. Gessen does a wonderful job of giving the reader real science without feeling the need to “dumb it down”. Those of you out there who find books about diseases and medicine interesting (like me) will enjoy this book.
I also think that readers who are struggling with their own decisions after being diagnosed with cancer will find value in Gessen’s journey, her writing, and her research. Genetic research and medicine is the future, and the future is now.
If you enjoyed this blog post please consider supporting me on Ko-fi. Thank you!