“Human beings are ultimately nothing but carriers — passageways — for genes. They ride us into the ground like racehorses from generation to generation. Genes don’t think about what constitutes good or evil. They don’t care whether we are happy or unhappy. We’re just means to an end for them. The only thing they think about is what is most efficient for them.” – Haruki Murakami
Sid and I have something profound in common: “Scarcely a day passes in my adult life when I do not think about inheritance and my family, writes Sid.” He has a family history of schizophrenia; I have a strong family medical history of Lynch syndrome and early deaths — we both think about our familial genetics on a daily basis. I fell in love with Sid’s work back in 2013 when I devoured The Emperor of All Maladies: goo.gl/xGcJLf. The Gene is his latest heroic effort to discuss the history of genetics and the implications that scientific advancements may hold for our genomes.
He argues: “… it is impossible to understand organismal and cellular biology or evolution — or human pathology, behavior, temperament, illness, race, and identity of fate — without first reckoning with the concept of the gene.” Having a background in biological anthropology and science I know this, I understand this. Genetic mutations, both good and bad, are necessary for the intricate processes of evolution.
Early on in the book, Sid discusses the pillars of genetics including: the Ancient Greeks, Gregor Mendel, William Paley, Charles Darwin, Charles Lyell, Reverend Thomas Malthus and Alfred Russell Wallace. We are introduced to the father of the eugenics movement — Francis Galton. Sid discusses history of eugenics and how people, mostly women, who were not deemed normal — ranging from dyslexics, orphans, prostitutes, and schizophrenics — were sterilized. Nazi Germany, along with Josef Mengele’s desire to eliminate “genetic detritus” is discussed. Honestly, I found this to be one of the most macabre, yet fascinating chapters of the book. My husband lost three of his grandparents in Auschwitz — I could not help but wonder if they endured the horrors Sid discusses.
This book is written for the layman but in all honesty, it is dense, deep, and long. Sid’s depth of knowledge and his uncanny ability to synthesize information from various subjects is overwhelming. As an advocate for those with hereditary cancer syndromes, I was happy to read that Sid shares my sentiments regarding inheritance. We inherit more than just our genes with our families — “…bad habits, bad recipes, neuroses, obsessions, environments, and behaviors.” I try to remind people with hereditary cancer syndromes about this all the time — consider the recommended risk-reducing surgeries per your mutation, be vigilant with your screenings, but also consider deviating from your family’s bad habits and behaviors, too. Cancer is the result of “hereditary, evolution, environment, and chance all mixed together,” writes Sid. Like I’ve always said, cancer is complex and a constellation of factors is involved in its development.
A few things more things I found interesting in the book…
- The word “mutant — a word that implies not just statistical uncommonness, but qualitative inferiority, or even moral repugnance.” With the genetic testing skyrocketing and more people becoming familiar with their deleterious mutation status, this word must stop being used. Whilst we are at it, let’s change the insulting and demeaning language surrounding cancer, too. “Survivor,” “previvor,” “fighting cancer,” “losing the battle,” — medical lexicons — it all has to go.
- My former professor on Human Sexuality from Northwestern University, J. Michael Bailey, a provocative and controversial figure, is mentioned in the book for his progressive work on homosexuality. Yes, unless you’ve being living in the Mesozoic Era, homosexuality has genetic roots. You may have recalled Professor Bailey in the news five years ago for his after-school sex toy demonstration with a naked woman. Sadly, this after-school demonstration was not offered to my undergraduate class.
- Thank God for Sid. He does a stellar job of articulating the implications of what it is like knowing you hold a deleterious gene mutation as he hits the nail on the head. “The future of a woman carrying a BRCA1 mutation [or any other hereditary cancer syndrome] is fundamentally changed by that knowledge — and yet it remains just as fundamentally uncertain. For some women, the genetic diagnosis is all-consuming: it is if their lives and energies are spent anticipating cancer and imagining survivorship — from an illness they have not yet developed. A disturbing new word, with a distinctly Orwellian ring, has been coined to describe these women: previvors — pre-survivors … The prophylactic treatments — mastectomy, hormonal therapy — all entail physical and psychological anguish and carry risks in their own right.” This quote reminded me of Paul Kalanithi’s quote: “How little do doctors understand the hells through which we put patients,” from the book When Breath Becomes Air. As a Lynch + female, I greatly appreciate this observation and sentiment — this anguish he mentions was the impetus for me to write about my experience with Lynch syndrome. The great lengths, which we, patients, with hereditary cancer syndromes go through to prevent cancer, are often minimized and disregarded. Much gratitude for bringing this to everyone’s attention, Sid.
- Genetics are complex and fascinating. Medical advancements and genetic editing technologies are raising complicated ethical and moral questions — and this becomes even more complex across cultures.
- We must realize and accept that “humans will produce variants and mutants; it’s an inextricable part of our biology … normalcy is the antithesis of evolution.”
- By the way, even though Sid does not mention this in the book, surely an oversight, men are also at risk for BRCA and other hereditary cancer syndromes. Hereditary cancer syndromes are deemed autosomal dominant meaning that a male or female carrier can pass these deleterious mutations onto both their daughters and sons. Each child of parent carrying a deleterious mutation has a 50/50 of having that mutation, too.
This is a must read for those interested in genetics — I highly encourage all of those who advocate for those with hereditary cancer to read this book.
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