My rating: 4 of 5 stars
Masha Gessen is a journalist of Ashkenazi jewish ancestry with a BRCA gene mutation that meant she watched her mother die of cancer and her statistical probability of getting ovarian or breast cancer was quite high. So she investigated the ways different populations with high hereditary instances of certain diseases deal with trying to control the diseases but still remain on an ethical/moral straight path.
The book takes a look not only at BRCA gene counseling in the U.S., but also a company that Hasidic Jews send potential marriage mate blood samples to in order to find out if recessive diseases like Tay-Sachs are a possibility, populations in the U.S. with high instances of the dominant, degenerative Huntington’s disease, and also Amish and Old Order Mennonite populations whose babies die young from Maple Syrup Disease (and enzyme issue), amongst others.
All the way through, Gessen provides a singular, embedded viewpoint filtering what she learns through her how journey of deciding how to handle the news of her own BRCA mutation. Should she do preventive surgery? Vigilant maintenance? What did this mean for the rest of her family?
At time, Gessen writes things from a viewpoint that I didn’t agree with. Sometimes they were health related things not really connected to her main questions about genetics, like in her quick survey of the history of eugenics in the U.S.:
“Cigarettes, doctors reluctantly will tell you, are dangerous only when consumed in large doses: Very light smokers can have the pleasure without the risk of lung cancer.”
Sometimes its her wry voice coming through in the way she calls herself a mutant (because of the BRCA) throughout the book that seems a tad too self-servingly deprecating.
And sometimes she is waxes poetically eloquent, like here when she is talking about Dor Yeshorim’s testing of potential marriage mates:
“God provides the spirit, the soul, the beauty of features, the sight of the eyes…One might conclude that where a child is deprived of sight, hearing, speech, movement, understanding, and discernment– as children with Tay-Sachs, Canavan, and Niemann-Pick certainly are– God had declined to do His part. Dor Yeshorim’s testing provides a peek to which couples will have these God-forsaken children.”
I won’t spoil the book by telling you what she decides to do in response to her own BRCA mutation. That is a journey worth taking with her through this book, finding out what she finds out, mulling over possibilities and consequences with her.
And with stem-cell debate and religion mixed up in genetics in the U.S., it’s well worth reading and realizing about what individuals such as the doctor in the book ministering to the Old Order Mennonites in Pennsylvania and small organizations like Dor Yeshorim are doing already in influencing human genetics.