Just Genes: The Ethics of Genetic Technologies

  • Carol Isaacson Barash
Greenwood: 2007. 288 pp. $49.95 £27.959780313349003 | ISBN: 978-0-3133-4900-3

DNA: Promise and Peril

  • Linda L. McCabe &
  • Edward R.B. McCabe
University of California Press: 2008. 356 pp. $39.95 £23.959780520251878 | ISBN: 978-0-5202-5187-8

Two new books attempt to bring the issues raised by the Human Genome Project before a broader audience. In DNA: Promise and Peril, geneticists Linda and Edward McCabe try to be tour guides. In Just Genes, bioethics consultant Carol Isaacson Barash tries to teach. Ultimately, neither book goes far enough to improve the public's understanding, and neither addresses contemporary problems that bedevil policy-makers and the public.

New genetic tests raise questions about privacy, but their reliability poses a bigger problem. Credit: R. CARR/AP

Barash provides an interesting, if poorly edited, historical account of ethically troubling genetic policies and programmes. “The goal of the book is to improve your ability to identify and analyze ethical issues,” she says, and opens well with a description of the ethical principles and theories that could be applied to the issues raised by genetics. But that is the last you hear of them. Subsequent chapters discuss the familiar subjects of genetic privacy, genetics and human behaviour, cloning and the like, yet fail to demonstrate how the theories apply. Instead, Barash provides long lists of questions, often more than a dozen, for each issue. Knowing what questions to ask is an essential first step, but a teacher should help the reader critically evaluate these issues.

In Promise and Peril, the McCabes fare only marginally better as tour guides. They wrote the book in part, they relate, so that “your concept of your own identity can truly be liberated”. Viva la liberación! But reading Promise and Peril is like visiting Paris with a guidebook written in the 1930s: the landmarks are mostly the same, but the political and social landscape is utterly changed. It is possible to find the Eiffel Tower, but where are the Internet cafes, the supermarkets and the ethnic restaurants?

Rather than chart unfamiliar territory for their readers, the McCabes, and to a lesser extent Barash, rehash the arguments about genetic determinism made more eloquently by Dorothy Nelkin and M. Susan Lindee in The DNA Mystique (W. H. Freeman, 1995). The McCabes declare that there is a widespread “perception that individual human futures are fully described in the sequences within each individual's genome” and set out to refute it. Barash similarly asserts that genes are commonly viewed as “encapsulating our innermost essence”. Most readers would agree that a society that believes that traits, both medical and behavioural, are genetically hard-wired will ignore social policies and focus on genetic fixes. But how extensive is genetic determinism as a world view?

The McCabes argue that the notion that genes are not destiny has been “extremely difficult for some geneticists to accept”. This statement is puzzling. The tools of molecular biology and genetics, such as temperature-sensitive mutations, are rooted in the understanding that genes plus the environment equals phenotype. Disproportionate attention to genes arises not because scientists think that genes are everything, but because the genome is finite, knowable, and we have the tools to explore it. The complexity of the genome pales in comparison with that of human behaviour.

The favourite whipping boy in each book's crusade against genetic determinism is the media. Yet serious studies of media representations of genomics fail to bear out their view, finding instead that determinism is seldom used by either the press or the public as a framing device for a discourse about genetics.

Both books devote considerable ink to privacy and genetic discrimination, especially misuse of genetic information by US health insurers and employers. Happily, the Genetic Information Nondiscrimination Act passed this year in the United States renders this discussion moot — the act will largely protect the privacy and integrity of genetic test results. Thus, the arguments forwarded by the authors can best be viewed as a historical footnote.

The most pressing policy question may not be the privacy of genetic test results, but the safety and accuracy of the tests themselves. This issue is at the heart of genomic medicine, yet is not addressed in either book. Barash mistakenly concludes that “deciding when pharmacogenetic testing is appropriate for commercial use will involve demonstrable proof of clinical validity and utility”. In reality, genetic tests — including pharmacogenetic tests — can enter the marketplace and be sold directly to consumers without any assessment of their usefulness or validity in a clinical setting.

The omission is notable given that Ed McCabe chaired the US Department of Health and Human Services Advisory Committee on Genetic Testing during its evaluation of genetic testing oversight. This committee concluded that government regulation was inadequate and put forth a series of policy recommendations. Because none of these recommendations was adopted, the issue still looms large — both for genetics and geneticists, and for medicine more broadly.

Good guidebooks should point out new attractions as well as old, and new texts ought to cover contemporary issues as well as the historical. Neither the McCabes nor Barash accomplish this — both books are rooted in past discourses and ignore current issues of greater public health and policy urgency.