The Terrible Gift: The Brave New World of Genetic Medicine by Rick J. Carlson and Gary Stimeling

[25 September 2002]

By Jennifer Bendery

Brave New World Revisited

“Some will hate it, some will love it, but biotechnology is inevitably leading to a world in which plants, animals and human beings are going to be partly man-made? Suppose parents could add 30 points to their children’s IQ. Wouldn’t you want to do it? And if you don’t, your child will be the stupidest child in the neighborhood.”
—Lester Thurow, Professor of Economics and Management, Massachusetts Institute of Technology

Offering a rowdy soapbox monologue on a host of discoveries in genetic medicine—including genetic technology, computerized biochemistry, and drug synthesis—The Terrible Gift reveals not one, but two, terrible things. One, the terrible possibility of medical, economic, and social disaster if genetic medicine of the future were to go awry within the U.S. health care system; and two, more noticeably, the authors’ own terribly misleading tactic of blurring the boundaries between credible medical research and alarmist, science-fiction scenarios for the sole purpose of scaring the bejeezus out of readers.

Written by health care consultant Rick J. Carlson (author of The End of Medicine) and freelance writer Gary Stimeling, The Terrible Gift questions the future of medicine at a time when genetic advances are currently blowing open doors to miraculous new therapies, but within the context of an increasingly profit-driven and less curative-driven system of care. Instead of genetic medicine being used by physicians to make sick people well, The Terrible Gift paints a much darker future of health care, one that is set up for the wealthy, by the wealthy, to make people, via genetic modification, “better”: smarter, sexier, happier, prettier.

Obviously, the potential for genetic medicine to revolutionize health care—more specifically, the quality and longevity of life—is both exciting (i.e. a cure for cancer?) and frightening (who decides what we can and cannot do?). But, in The Terrible Gift, the presentation of these issues, while informative at moments, amounts mostly to a series of ridiculous, “dumbed-down” metaphors, spooky science-fiction scenarios, and empty “page-filler” language that takes away from the credibility of the authors. There is such a lack of clear division between informed commentary and intentionally alarmist depictions, compiled by countless “fluff” passages that make irresponsible claims or say nothing at all, that the book remains a shaky source for realistically grasping the future of genetic medicine.

It is difficult to take the authors seriously when they begin a chapter section with a statement like, “Doctors make the best killers.” At times, the book even comes across as snide. Take, for example, the book’s overall outlook of the role of genetic medicine within the U.S. health care system. “In terms of science, then, the forecast for medicine looks bright and sunny. In terms of delivering the miracles fairly and efficiently to the people who need them, however, the forecast is rain, possibly heavy at times.” Not only does the book make less-than-hopeful predictions about genetic medicine at a time when nobody knows where things are headed at this early stage, but it speaks to the reader as if he or she is in fourth grade. Other colorful metaphors relate to predictions on the future of molecular medicine, which the authors believe will inevitably entail a “frontier-style gold rush” for profits, amounting to “the modern medical carnival: a theme park where every barker promises the ride of a lifetime.”

The book focuses on Viagra and its financial success (it grossed $1.5 billion in the first year) as a symbol of health care’s clearest shift from curative and person-oriented to pleasure-focused and profit-oriented. But while the prospect of a corporate-driven health care system pumping out genetic medicine for “bettering” people, versus helping sick people, is frightening, The Terrible Gift tackles this in an irresponsible manner. The book reads, “Viagra follows birth control and breast reconfiguration as a medical aid toward fulfillment of love needs.” Perhaps these authors need to talk to more women? To think of a woman taking birth control as a means of fulfilling love instead of a means of avoiding unwanted pregnancy is absurd. Similarly, breast “reconfiguration” includes breast reduction, a procedure frequently requested by women with severe back problems as a result of too-large breasts. In addition, breast enlargement is gaining popularity as a professional step for women (and men) who work as erotic dancers or in other professions involving the visibility of their bodies. Are these “medical aids” related to a need for love?

In the same vein, in their enthusiasm, the authors often make statements that have little or no basis whatsoever. Consider this commentary: “The natural-foods and self-health movements and the tiny minority of people who seek a frugal life close to the earth have been the only (negligible) restraint on the expansion of medical costs.” It’s difficult to pinpoint which people in the U.S. the authors are referring to who are seeking “a frugal life close to the earth,” and even more unlikely to think the authors could be referring to people who shop at expensive Whole Foods Market natural-foods stores for not-so-healthy $18.00 blue cheese wedges.

Uninformed scare-tactics employed by these authors are particularly evident when the book addresses the highly publicized incident involving monarch butterflies that died after ingesting the pollen of “Bt corn”, a patented strain of corn modified by adding a pest-resistance gene affecting only butterfly larvae. The authors suggest “this [incident] may be an educational foretaste of our own medicine.” This episode received extensive bad press, both because of the general public’s soft spot for butterflies and because of suspicions around genetically modified foods. In reality (and I only know this because my partner studies genetics), the study that claimed the modified corn pollen was killing these butterflies had statistical errors and is being redone. As of present, there is no statistical basis for those findings. In addition, while it is possible that this corn pollen killed some butterflies, the more common practice of using crop dusters wipes out all butterflies, all insects in fact, all the time. The Terrible Gift mentions neither the flaws with the corn study, nor the more devastating and commonplace effects of crop dusters.

Still, perhaps the book’s most disturbing passage relates to mental illness. “Psychiatric drugs and psychotherapy are medicine’s still-primitive tools for helping people find self-esteem and self-actualization.” It’s puzzling how the book dabbles in statistics but fails to back up this statement, particularly when it is commonly known that a host of physiological, genetic, and social factors—and not simply a lack of self-esteem or self-actualization—are at the root of people’s mental health issues. The book’s suggestion that therapy and medication are primitive tools—when in fact the combination of both tends to significantly help nearly 80% of the estimated one in eight people who suffer with depression in the U.S., for example—is, in fact, primitive. Oddly, the book later offers a starkly different perception of mental illness in discussing a psychotic patient who was denied treatment and received coverage only when the psychiatrist threatened to send her over to the health care company’s corporate offices. As illustrated by these offices quickly agreeing to serve this client only after the threat of having to deal with a psychotic person in the flesh, severe mental illness shares little with a need for more self-esteem.

To be fair, the book isn’t all bad. There are some surprising statistics and eye-opening commentaries on the current state of the U.S. healthcare system. For example, who knew nearly 1/5 of the U.S.‘s entire gross domestic product is spent on health care? And unless you are a biologist, who knew that 99.8 percent of our DNA sequence is identical in all people; only 0.2 percent is different among us. The book raises some relevant questions about genetic medicine and the U.S. health care system as well: if the U.S. system of care is built around a treatment-oriented model of care versus a preventive model of care, how will genetic medicine—an inherently preventive form of care—make a good fit?

It is exciting to consider the list of genetically based medical breakthroughs the authors foresee in the next 20 years. These potential advances include new antibiotics for bacteria that cause syphilis, gonorrhea, and meningitis that are more effective and without side effects; vaccines against tooth decay and the common cold; new “designer estrogens” for helping prevent hot flashes, vaginal dryness, and osteoporosis for postmenopausal women, without raising the risk of blood clots or breast cancer; several drugs for treating Parkinson’s and Alzheimer’s disease; and hundreds of new cancer drugs.

These are inspiring prospects, but they are merely speculations by the authors, neither of whom are doctors and neither of whom address the typically long, slow and tedious process involved in the progression of each of these advances. Indeed, the reality of such possibilities fades when the book takes possible future breakthroughs even further to suggest that within the next 20 to 50 years, “a person’s entire genome (i.e. entire set of genes) might be routinely upgraded or rejuvenated by means of stem cells. Individual genes would be knocked out and replaced to repair or improve certain tissues; the new replacement cells would be cultured in the lab, then seeded back into the client. Such methods promise indefinite prolongation of life without aging.” So twenty years from now, we can hope to live forever, thanks to upgraded “genetic cassettes” of stem cells being put into our bodies? This seems highly unlikely considering that current stem cell research is severely restricted by the federal government, in addition to being extremely in the early stages of research for such lofty plans.

All in all, The Terrible Gift easily could be slimmed down by at least 2/3 of its current length, which would make it a more informed and effective resource on the potential of genetic medicine. With its empty talk (“Tomorrow’s medicine will have amazing new powers”), its melodramatic metaphors (“Bugs in the [genetic] code won’t be quite so funny if the [computer’s] Blue Screen of Death stops being a metaphor”), and its bizarre science-fiction imagery (“gene scholarships” being awarded by universities to “those who show the most promise”), it is difficult to envision that nanobots and “androids using the Web to trade data for the factories they run” will lead us to Oz, where the Greek poet Hesiod divined the lifespan of dryads.

If the authors’ intention was to offer realistic possibilities involving genetic medicine gone haywire, the book rests on shaky ground. But considering the book’s dramatic (and fictitious) introduction about an unknown disease spreading from a schoolteacher in New Jersey to the rest of the world, wiping out most major cities and claiming one billion lives within eight years, the book seems much more successful in instilling bewilderment and the fear of God into the reader than in talking realism. In this case, perhaps The Terrible Gift will find a cozy home on the science-fiction shelf at Borders.

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