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Blood MattersReview - Blood Matters
From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene
by Masha Gessen
Harcourt, 2008
Review by Leo Uzych, J.D., M.P.H.
Mar 21st 2009 (Volume 13, Issue 12)

Blood Matters is a fascinating book.  The author, Masha Gessen, is a Moscow based journalist who has deleterious mutation of a gene (BRCA1) associated with ovarian and breast cancer.  The common bond, holding the book's substantive matter together firmly, is a sharp focus on genetics.  Gessen's unrelenting efforts to explore the challenging frontiers of genetics interestingly, and instructively, uncover a panoply of unresolved, real life issues.

The textual details recounted by Gessen relating to how knowledge of  having a cancer linked, mutant gene has affected her life personally place a sobering human face on  hereditary diseases.  The question of whether a woman should have her breasts and ovaries removed surgically, if genetic testing shows that she is at relatively high risk of developing breast and ovarian cancer, is one which confronted Gessen personally.  As explained in detail in the text, Gessen's carefully considered eventual decision was to have her breasts removed (in a proactive attempt to ward off cancer). 

The highly selected autobiographic facts described by Gessen are tailored finely to fit the real life effects of having knowledge of a cancer linked, gene mutation.  Regarding such descriptions, Gessen proves to be a particularly accomplished writer, revealing a sharp eye for text animating details.  The textual body is enlivened further by Gessen's considerably evident skills as a wordsmith.

Multitudinous conversational fragments, gleaned often from medical professionals and scientists with specialized knowledge of genetics, comprise another element contributing significantly to the textual composition.  The anecdotal nature of such information, however, may be disquieting to readers insistent on peer reviewed, scientific data.  And to the extent that sentence snippets have been excised selectively (from particular conversations), and then grafted into the textual body, there may be further critical concern that Gessen may have painted incompletely detailed paintings of particular conversations.

Exposition and critical scrutiny of some of the scientific research literature pertaining to genetics is yet another important element of the textual substance.  But the science laden discourse of Gessen may raise the eyebrows of critics questioning how reliant the reader can be on the science centric discourse of an expertly skilled journalist.

The genetics focused substance comprising the book covers considerable scientific ground.  One stratum is embedded in Vienna.  The recounted story of a man who was a witness to murderous Nazi medicine, as practiced at a place called Spiegelgrund, sheds some light on the dark shadow of Nazi medicine lingering historically over genetics.

The important contributions of Dr. Henry Lynch regarding the heritable nature of cancer form the substantive heart of another chapter.  Gessen expounds informatively on Lynch's role as a pioneer of the idea of prophylactic surgery for hereditary cancer.

Huntington's disease draws Gessen's rapt attention in another chapter.  Genetic testing for Huntington's disease is described; and, throughout the chapter, the grave symptoms of the disease, and its lethal progression, are spelled out in sobering detail.

The cynosure of another chapter is "matchmaking" (in search of a suitable marital partner), as practiced in the Hasidic and Orthodox communities.  In this regard, the development of an intriguing premarital, genetic disease prevention program ("Dor Yeshorim") is described.

The roots of genetics based medicine, as planted in Lancaster County, Pennsylvania, comprise another stratum of the text.  The determined efforts of a doctor named Holmes Morton to combat an enzyme deficiency disorder called maple syrup disease (which is relatively common among babies born to Old Order Mennonites in this area), as well as his efforts to fight a recessive disorder called glutaric aciduria type 1 (which is relatively common  among the Amish in this area), are recounted absorbingly.

In another chapter, Gessen works hard to disentangle some of the scientifically inscrutable strands binding genes and behavior.  The efforts of Soviet scientists (prominently including geneticist Dmitry Belyaev) to fathom some of the profundities of behavioral genetics are described.  These efforts entailed the study of animals (including silver foxes, minks, and rats).  The reader in diligent search of edification should be cautiously mindful that any attempts to extrapolate data results from animal studies to humans may be fraught with considerable scientific peril.

The crux of the book's last chapter is the problematic drawing of a line properly separating allowable versus not allowable criteria in choosing, or not choosing, to have offspring, based on genetic testing results.  For example, is it proper to use prenatal testing for the purpose of sex selection?  Gesssen's examination of some of the thorny issues found in the nettlesome field of preimplantation genetic diagnosis will likely hold the reader in thrall.

A multitude of citations, together with a glossary of some genetics linked technical terms, adjoin the text.

This book is a wonderful contribution to the genetics literature.  Gessen's riveting recounting of her personal experience of having a cancer linked gene reveals, at an individual level, some life altering effects of knowledge of having a gene mutation, and imbues the textual body with visceral emotion.  And very importantly, the book also has global import, because the informative discourse of Gessen draws much needed attention to many of  the unanswered, and often contentious, questions populating the realm of genetics.

Geneticists, behavioral geneticists, population geneticists, genetic counselors, gynecologists, oncologists, surgeons, biochemists, molecular biologists, hematologists, neurologists, family medicine doctors, social workers, bioethicists, public health professionals, and health policy makers are among those who likely may be strongly attracted professionally to the book's edifying contents.

© 2009 Leo Uzych

Leo Uzych (based in Wallingford, PA) earned a law degree, from  Temple University; and a master of public health degree, from Columbia University.  His area of special professional interest is healthcare.


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