Risky (Genetic) Business

Gessen layers her powerful personal story with reports on pioneering research in genetic testing and daunting ethical questions.

Gessen layers her powerful personal story with reports on pioneering research in genetic testing and daunting ethical questions.

by Sandee Brawarsky
Jewish Week Book Critic

Masha Gessen, like her mother, is a writer and translator. The two women weren’t close, and when her mother died of breast cancer at age 49 in 1992, the younger Gessen believed that she would live longer, that she had more strength and less fear of life than her mother had.
“I thought my gifts were my own, making me free from her legacy altogether. Then I found out that I got everything from her, including the flaw that killed her,” Masha Gessen writes in “Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene” (Harcourt).
In 2004, Masha Gessen underwent genetic testing in Boston, and learned that she had a mutant BRCA1 gene,

one of two genes known to play a role in the development of breast and ovarian cancer, and that are found disproportionately among Ashkenazi Jews. At the time she became part of what she calls “the cancer caste,” she had a young son and daughter. She learned that her chance of getting afflicted with breast cancer was about 85 percent, and about 40 percent for ovarian cancer. After doing extensive research on the risks and consequences, she ultimately made tough but informed decisions about her care and her future, which she discusses in detail.
A fine writer, Gessen has composed an intelligent, provocative and important book. With no self-pity and even some humor, she layers her powerful personal story with reports on pioneering research in genetic testing and daunting ethical questions. Gessen explores the possibilities of gaining unprecedented knowledge about the clues inscribed in DNA, and then raises questions of what to do with that information.
Born in Moscow, Gessen, author of “Ester and Ruzya: How My Grandmothers Survived Hitler’s War and Stalin’s Peace” and “Dead Again: The Russian Intelligentsia After Communism,” immigrated to the United States with her family in 1981. She returned to Moscow in the early 1990s and has been working there as a journalist, and has also reported from the Balkans. A special correspondent for The New Republic, she has been deputy editor of Bolshoy Gorod (The Big City), the largest circulation independent periodical in Moscow. She has also published two books translating Russian prose and poetry into English. This book began as a series for Slate.
She writes, “My generation, making radical and underinformed decisions, may be lucky to be the guinea pigs — or not. In the past ten years a few thousand mostly Jewish, mostly midlife women, mostly in the United States and Israel, have gained the kind of knowledge humans are unfamiliar with having. I had my fortune told by a genetic counselor at a high-tech medical center in Boston.”
About the BRCA1 and BRCA2 genes, she writes, “That these mutations were discovered first among Jewish women is probably largely, though not entirely, an accident.” As she explains, Jews are an obvious choice for the study of genetics, as they make up compact populations certain to share many genetic traits, and are frequently found near large medical-research centers — and are willing to cooperate on research. And, the positions taken on key issues related to prenatal and pre-implantation testing, gene therapy and stem-cell research, has allowed related research to flourish in Israel.
While there’s much information about Jewish genetic diseases and the author’s own Jewish background, “Blood Matters” is of interest beyond the Jewish community.
“The information we gain from genetic testing has a way of filling us with awe and a sense of having touched the forbidden: knowledge of the invisible and the intangible, and, more important, knowledge of the future,” she writes.
The book is particularly engaging in its stories: Gessen writes of the researchers at the forefront of genetic research. She visits the Reproductive Genetics Institute in Chicago, with roots in the former Soviet Union. The first place in the United States to do chorionic villus sampling (CVS), an alternative to amniocentesis that can be done earlier in the pregnancy, the Institute is also the first place where pre-implantation genetics diagnosis has been offered and it claims to house the largest stem-cell lines in the world. For the directors of the Institute, the future is already here. This is also where the first “spare parts” baby was conceived, that is, a child selected as an embryo in order to be a suitable donor for a sibling ill with a debilitating disease. In this way, a child can be cured through a bone marrow transplant, and the designer baby suffers no harm in being the donor.
The medical directors tells Gessen that they’ve been asked by families to help them have a baby with a congenital abnormality, like the case of a couple who wanted to have a baby with Down syndrome in order to provide companionship for the Down syndrome child they already had. But they refused.
She also writes about Dor Yeshorim, an organization that has devised and operates a successful premarital genetics testing program, searching for threatening or extremely debilitating early-onset diseases inherited through a recessive gene. Their efforts have virtually wiped out Tay Sachs in the Orthodox Jewish community. In “an accepted rite of passage,” young people are tested in high school, although they never learn the results as to whether they might be carriers of genetic diseases or not. Rather, when a young couple is thinking of getting married, they call in with their identifying numbers to see if they are compatible. Couples who get the news that they’re not compatible are known to break off their relationships. This withholding of information is controversial.
Gessen also describes studies done among Cohanim, the priestly caste who have certain obligations and privileges in synagogue and everyday life; studies among the Amish; and historical and religious views. Even the index makes for compelling reading, as the breadth of her topics and the interconnections are evident.

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