Monday, May 11, 2009

The Strongest Boy in the World: How Genetic Information Is Reshaping our Lives. Review

Stories involving genetics abound in the mainstream press; we are continually confronted with reports about controversies or breakthroughs around cloning, stem cell research, animal– human hybrids, ‘designer babies’, the breast cancer genes BRCA1 and BRCA2, or yet another man on death row freed after DNA testing proves his innocence. How does the average person not schooled in molecular biology or genetics make sense of these stories? The Strongest Boy in the World: How Genetic Information Is Reshaping our Lives aims to demystify some of the genetics-based controversies of our age and ‘ameliorate the unease’ that many people have about the science.

While the story about the so-called strongest boy is a curious anecdote about a four-year-old boy in Germany with unusually large muscles, it is the subtitle that more adequately addresses the heart of this lively collection of essays. Philip R. Reilly (physician, lawyer, geneticist and former CEO of Interleukin Genetics) describes for a lay audience the role that genetics plays in the transformation of our world, in such vastly different arenas as medicine, sports, pets, crime, our food supply, genealogical research and reproduction.

Being confronted by evidence that so much of our lives is apparently being infiltrated by genetics research may leave some readers feeling more unease, not less, despite the author’s intentions. For his part, Reilly does not portray a completely rosy picture of our brave new world, nor does he back away from discussing the complicated ethical dilemmas and unintended consequences such research raises.

One of his previous books includes The Surgical Solution: A History of Involuntary Sterilization in the United States, and the spectre of eugenics hovers over several of the essays here.

Because Reilly writes about such a wide range of topics (genetic screening of athletes, the origins of ‘race’, gene therapy, cloning dead pets, ‘golden rice’, and DNA forensics, to name a few), The Strongest Boy in the World at times feels scattered and undeveloped.

The reader is left wanting to know more about the role that genetics plays in human longevity, for example, before jumping into the next essay about whether or not there is a genetic basis behind disparities in IQ.

On the other hand, while Reilly may have sacrificed depth for breadth, its breadth is indeed one of the book’s main strengths. It underlines his central argument that genetic information is transforming what seems to be virtually every aspect of our lives.

Some of these aspects, as Reilly characterizes and organizes them, are humanity, disease, animals and plants, and society. Genetic information affects how we understand ourselves in terms of our innate capacities, and by doing so, raises the possibility of using technology for enhancement, such as ‘gene doping’ to gain an edge in sports. Searching for genetic bases of medical disorders may provide insight not only into the origins of illness, but may yield therapies, treatments and possible cures.

Reilly is especially strong in discussing the bioethics of genetics and disease. Genetics has reconceptualized the meanings of risk, from the point of view not only of individuals and families affected, but also that of pharmaceutical companies, physicianscientists and society at large. If DNA testing reveals certain people to be ‘at risk’ of developing a life-threatening disorder such as Huntington’s Disease, for example, how will this information change the way they live, such as decisions to marry or have children?

Of what value is genetic testing for disorders when there is no satisfactory treatment? To what end should the information gathered about the genetic origins of medical disorders be used?

The last question could well be asked of much of genetic research today: we should be having conversations about motives behind this knowledge seeking, about what we are to do with the knowledge that it yields, and how we are to judge the efficacy of what may be largely predictive, not definitive, data. Popular media (both the science press and science fiction alike) often presents genetics as the ultimate, determinist set of knowledge, eliding the role of the environment in its interaction with genes. Yet as a geneticist such as Reilly will tell you, some aspects of the science is akin to a bookie giving odds (p. 243).

Reilly appears to be most ill at ease when genetic information is used towards eugenic ends or social engineering (such as using pre-implantation genetic diagnosis to select desirable traits in offspring), but he is no Luddite. He champions the use of genetically-modified corn and rice as techno-fixes to world hunger, marvels at how haplotype analysis of Y chromosomes and mitochondrial DNA can be used to study evolution and genealogy, and makes an impassioned plea for stem cell research.

Regardless of where one stands in terms of the ethical dilemmas and policy implications Reilly raises, it is hard to disagree with him on the point that the way we understand ourselves, our environment, our history and our society has been fundamentally altered by genetic information. That his writing style is animated, anecdoteheavy, and not filled with jargon does not hurt, either. Essays would be appropriate for discussion in undergraduate and graduate courses in bioethics, genetic counselling and the sociology of science.

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