Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene

  • Masha Gessen
Harcourt: 2008. 321 pp. $25.00 9780151013623 | ISBN: 978-0-1510-1362-3

In 2004, journalist Masha Gessen published a personal account in the online magazine Slate of an increasingly common modern medical dilemma: how to respond to genetic diagnoses that offer both too much and not enough information. Gessen, a 37-year-old with a mutant form of the BRCA1 gene that is associated with an increased risk of breast cancer, promised to announce in the next issue whether she would undergo preventative surgery to remove her breasts and her ovaries to reduce her chances of developing cancer. Her book Blood Matters, now published four years on, explores the difficulties this decision involved.

Three women in this family had breast cancer. Would they have been helped by a genetic diagnosis? Credit: G. ROBERTS/REX FEATURES

Gessen encountered similar issues to those described in an earlier first-person narrative of genetic diagnosis, Mapping Fate by Alice Wexler (University of California Press, 1995). Wexler chronicled her experience of living in a family affected by Huntington's disease in the wake of the 1983 discovery of a genetic marker for the condition. She had a front-row seat from which to produce an account of what it means to have one's fate mapped genetically: her mother died from Huntington's, her sister is one of the leading scientists who helped to find the Huntington's gene, and the research was partly funded by the Hereditary Disease Foundation established by their father. At the centre of Wexler's narrative lies a powerful lesson about the burdens of genetic knowledge. Paradoxically, the difference between abstract genetic information and real personal experience could be described as a knowledge gap. For the Wexlers, this gap was illustrated by the fact that, having found the gene and developed the test, neither sister was prepared to take it.

'To know or not to know' has thus become an added dimension of inherited pathology, creating new kinds of bonds and conflicts over the meanings of inherited genetic substance, among family members and unrelated people who share the same condition. This ambivalence is created by the very means intended to alleviate the burden of suffering to begin with — the production of detailed and accurate knowledge of how genes work. As in prenatal testing, the surfeit of explicit, readily accessible and sophisticated technical and scientific knowledge can make decisions that are based on genetic information more, rather than less, difficult.

Gessen's exploration of her own genetic inheritance, and her world tour of genetic research facilities and hospital clinics, highlight the dilemma of genetic decision-making more vividly than any such narrative to date. She comes to realize that the frontier of genetic medicine for her condition is “essentially surgical”. She moves beyond weighing up the pros and cons to investigating the paradigms that shape genetic research, taking the reader on a breakneck tour of medical, biological, statistical, psychological and economic perspectives on genes, genetic risk and genetic disease. These snapshots produce a very contemporary form of autobiography — the autogenography, perhaps.

What she learns affects her ideas about herself and her children. From an apartment window in Moscow, she watches her adopted 9-year-old son drinking beer with a stranger in a park and reflects on the “dangerous business” of applying theories of genetic drift to humans when so much of how we are shaped is environmental. Is her son drawn to alcohol consumption from an early age by imitation or by genetic orientation? Like many commentators on the new genetics, Gessen is struck by the proliferation of genetic explanations in everyday life. She coins the term 'biobabble', after psychobabble, to describe how the gene is overused as a justification, such as when “midcareer professionals start explaining to potential partners that they had never formed an intimate relationship because of this or that polymorphism”.

Despite its futuristic subtitle, and the novelty of increasing 'genetic choice' as a result of developments in gene testing, the somewhat unexpected lesson from Gessen's book is that the difficulties associated with genetic futures are not so new. They are being solved with the same combination of heart and mind that is one of the defining characteristics of being human, she finds. An unfortunate absence in Gessen's account is the scholarly contribution from social science or social psychology, such as in Theresa Marteau's and Martin Richards's landmark book The Troubled Helix (Cambridge University Press, 1999), which also illustrates this point. Here, and in the wide literature providing qualitative analysis of the genetic knowledge gap that separates abstract scientific facts from actual human experience, Gessen would find that the active and engaged community she describes in Blood Matters is even larger than she thinks.