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You and Your “Geneware”
Beyond Genetics: Putting the Power of DNA to Work in Your Life
by Glenn McGee

Reviewed by
Jerry E. Bishop

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Advances in genomics are coming so rapidly that University of Pennsylvania bioethicist Glenn McGee decided it is time to warn the average person how this new science is going to change daily life. That, at least, is the declared purpose of his short book, Beyond Genetics.

Unfortunately, the author is long on generalities and short on details, and the book fails to fulfill his mission.

“The storm on the horizon is enormous,” McGee asserts in his opening chapter. “Suddenly you are an operator of your own DNA—of your own geneware. In the twenty-first century we will change our genes, though much of the miracle will be subtle; we will be altering the environment and transforming nutrition rather than cutting and pasting genes in the bodies of our friends and ourselves. The amount of genetic information at our disposal will be extraordinary and the combination of silicon-based hardware and genetic software—geneware—will enable radical new choices to be made.”

After some overly simplified explanations of gene technologies, McGee skims across a wide spectrum of ethical, social, and economic issues raised by the quickly evolving field. These issues range from misinterpretations of genetic tests and commercial misuse of genetic information to the questionable value of gene therapy and whether one owns rights to one’s own genes. He even touches briefly on genetic modification of foods and on questions raised by what he calls “genomic children” born to infertile couples with the help of genomic techniques up to and including cloning of human embryos.

McGee raises the likelihood that the explosive demand for genetic tests will soon force the task of genetic counseling onto the computer. A CD-ROM that counsels people about a genetic test for susceptibility to breast and ovarian cancer is already available from the University of Wisconsin.

“My greatest fear is that society will commercialize technologies that do not yet work very well.”
McGee gives the digital counselor high marks, citing research findings that people who viewed it understood the genetic test better than those who discussed it with a human counselor. “But the program was not a psychologist,” he adds. When people described how they might feel if the genetic test showed a susceptibility to cancer, the computer responded only that “These feelings are important and valid.”

Thus, consumers soon will have to decide whether to seek genetic counseling from a human who has value-tinged opinions but can provide empathy or from a computer program that offers value-free information but limited empathy.

McGee presents most of the issues he raises with such brevity it is difficult to know exactly what point he is trying to make. He seems to be most concerned that commercial interests may distort the use of genetic advances. Early on he declares that “My own greatest fear is not that society will go too far, somehow losing our or our children’s ‘humanity,’ but rather that it will commercialize technologies that do not yet work very well.”

The one example McGee examines in some detail, albeit too little detail, is the case of Karen, a friend with a family history of breast and ovarian cancer. The discovery of a malignancy in one breast prompted her to request a genetic test developed by Myriad Genetics that she read about in a magazine.

McGee says the discovery that she had the BRCA-1 mutation was enough to send her “over the edge” into “self-mutilation” as he terms the removal of her breasts and the prophylactic removal of her ovaries. The attempt was futile. Subsequent biopsies revealed cancer cells in her lymph nodes.

McGee charges that Myriad and the medical profession rushed the BRCA gene test into use far too fast, using data drawn only from families in which breast cancer was extremely common. Little was known about families that had the BRCA mutation but in which breast cancer was uncommon. And, he writes, almost nothing is known about how the mutation might lead to cancer.

Moreover, he asserts, instead of promoting the new BRCA test to genetics laboratories and genetics counselors, Myriad “mailed 100,000 brochures advertising its test to the customers it believes will replace medical geneticists,” that is, family physicians. This despite the fact that few family physicians have the training necessary to judge the validity, reliability, and nuances of genetic tests, he says.

Myriad, he charges, “epitomizes what I have described as ‘drive-through genetics,’ the effort to dramatically reduce the turnaround time between finding a gene and marketing a test.” He writes that such “drive-through” genetic testing, “has spread beyond breast- and ovarian-cancer testing; many genetic tests are now offered directly to physicians, and direct-to-consumer genetic testing is available at a small number of ‘health enhancement’ clinics in many nations and on the Internet.”

Unfortunately, McGee doesn’t help readers delve any deeper into the Myriad case or into the instances of direct-to-consumer genetic testing. Throughout the book, he fails to attribute, much less provide sources for, his allegations. For the chapter concerning Myriad, he suggests—without giving page numbers—ten books and journal articles for “further reading,” most of which would be difficult for the lay reader to access. The “Notes” section for the entire book totals only eight entries.

On gene therapy, another subject of great public interest, McGee reveals that he had an inside view of the controversial 1999 attempt at the University of Pennsylvania to use gene therapy for a rare metabolic disease, ornithine carbamoyltransferase deficiency. McGee and his colleagues were asked to write a paper about the ethical issues in the experiment.

“Early on it became clear that there would be tension between the ethics side and the science side,” he writes.

The ethicists raised several questions about the trial, including whether there was a “profound misconception among researchers and subjects about what is being attempted, and, more important, a real question about whether to call the research ‘therapy’ at all.”

An 18-year-old patient and volunteer, Jesse Gelsinger, died as a result of the experiment, leading to a halt in human gene therapy experiments. The ethicists’ paper was never published. Although, as McGee notes, Rick Weiss of The Washington Post did an excellent investigation of the experiment, readers of Beyond Genetics will wish McGee, as an insider, would go into detail about what went on behind closed doors and the tensions between the ethicists and the scientists.

McGee talks down to his readers, somewhat like a professor lecturing his students, and the book reads like a long newspaper editorial or a sermon. The biggest problem with Beyond Genetics, however, is that it lacks supporting facts, data, and examples for many of the author’s assertions and predictions.

For instance, he discusses the sending of genetic information over the Internet, stating that “Prominent computer genomics labs promise that DNA chips will be ready for use outside the automated lab within three years.”

By using such DNA chips and the Internet, consumers will be able to do their own genetic testing at home, he predicts. “No middle class suburbanite will be without home DNA analysis in 2010,” he adds. He fails to identify the labs that are developing such a consumer-oriented system, their plans to put it on the market, or any other evidence to support the three-year and 2010 predictions.

He then states that “Genetic testing will tell you what foods are likely to provide the best possible match for your metabolism and what time of day your body is best able to digest them.” Again, readers might wonder how metabolism and digestion can be predicted from genetic tests and why anyone would want to know.

Far too often, McGee drops a tantalizing hint of a major issue in the making but then changes the subject, leaving the reader dissatisfied. For instance, he writes that genetic counselors “are terrified, pretty much to a person, that they might somehow accidentally promote eugenics” and for this reason, won’t discuss whether a genetic test is appropriate. He does not discuss the issue’s potentially explosive implications.

Anyone who remains astonished at the eruption of genomic information in the last two decades can’t quarrel with a prediction that the genomic revolution will spawn “enormous” changes in human society in the coming century. And undoubtedly many of the issues raised will be among those that McGee suggests.

But where each issue deserves exploration, McGee delivers generalities instead. For this reason, Beyond Genetics will be of little help to the lay reader that McGee professes to address.

Jerry Bishop is the retired science editor of the Wall Street Journal.

McGee, Glenn. Beyond Genetics, Putting the Power of DNA to Work in Your Life. William Morrow/HarperCollins, New York, 2003.

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