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Blood Matters, by Masha Gessen
Genes, the final frontier...
Friday 15 August 2008
Masha Gessen a Russian-born journalist, is launched on a voyage of genetic self-discovery in 2004 when tests reveal she has a genetic mutation that substantially increases her risk of developing ovarian and breast cancer. This "journey along the genetic frontier" seeks to "understand how people can make decisions in the age of medical genetics".
The personal perspective makes this introduction to human genetics alluring. On her travels through Israel, Russia, Austria and the US, she meets evangelical and ambitious medics, scientists and entrepreneurs, and engagingly conveys what they're up to. Yet the context of all this wheeling and dealing in human genetics never gets much of a look in. She neglects the potentially devastating implications of genetic testing for health insurance, or the battle to ensure data on the human genome remain in the public domain. What's missing are insights from sociologists, anthropologists and political scientists studying medical genetics.
Gessen explores her Ashkenazi Jewish background, and discusses the genetic diseases that plague this population. This leads her to companies offering geneaological testing and ethnic typing. She acknowledges the risk of Nazi-style abuses, yet arrives at a strangely complacent conclusion: that by applying genetic knowledge "to individuals and not groups", the temptation to "generalise and create population-wide policies" can be avoided.
She's fascinated by the science, and claims made for it. She imagines all our lives will be governed by a genetic crystal ball, and appears thrilled.
Much of the book is taken up with her struggle to decide whether to have prophylactic surgery – to reduce her risks by having her ovaries and breasts removed before signs of cancer appear. In the end, she opts for breast removal, joining the "frontier women" "cutting off their breasts to spite their genes".
Gessen says she belongs "to a generation that grew up believing we were shaped by love, care, or lack of it". Yet now, she says, "we will go to our graves believing that it is a combination of letters in our genetic code that determines how we got there, and when".
She argues that behavioural genetics will transform "our understanding of ourselves". She believes we will turn to genetic tests, rather than psychotherapy, to tap into the source of self-knowledge – "biobabble" will replace psychobabble. "In the era of the genome, we all want a printout of who we really are." But do we? This notion of a hidden essence, our destiny written in our genes, runs deep through Gessen's quest. Yet the evidence isn't terribly convincing; even Gessen concedes that "studies often fail to corroborate the earlier findings". Grandiose claims to have discovered "the gene" for aggression, homosexuality, drug addiction or whatever have all proved premature. Perhaps, the more we learn about how the genome works, the more we will come to appreciate how complex the relationships between our genes and our actions are.
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