|The Future of Medicine|
|A review of Rick J. Carlson and Gary Stimeling's|
The Terrible Gift: The Brave New World of Genetic Medicine
Posted: August 2, 2002
The Terrible Gift promises and delivers an "in-your-face" look at the development of genetic medicine within the US health care system.
The authors, Rick J. Carlson, who consults for major health care organizations, HMOs, and governments, and science writer Gary Stimeling, consider a future in which medicine is as much about making 'improvements' in healthy people as it is about making sick people well. They warn that this form of biotech medicine will increasingly leave the poor without access to adequate care while providing the rich with treatments that may improve one's physical appearance or well being but are hardly essential to good health.
The seriousness and subtleties of the issues, however, are betrayed by the authors' naïve belief that the inequities of our system can only truly be solved through the elimination of the for-profit industry at all levels, and by their presumption that developments in medical genetics will be primarily bad.
The book is divided into three parts: The first presents the authors' views on the new science as well as their opinions about the current health care system; the second section is called "Dangers of Biotech Medicine"; and the third section includes a set of conclusions and recommendations that reflect their belief that there has been too little public discussion of the issues.
The authors provide an adequate if unimaginative description of genetics to help lay readers understand the potential of this science. Their description of how the modern American health care system arose and why it is flawed is stronger. They trace the foundations of our system from the beginnings of modern insurance in 1929.
The authors argue that within a capitalist health care system, which includes the biotech and pharmaceutical industries, the quest for profits in drug development and the insurance industry drives up consumer costs. The authors point fingers both at the market (and activities such as corporate mergers) and at medical breakthroughs that have the potential to "give rise to entire new industriesmassive opportunities for profit as well as huge new cost centers." In other words, the search for profits will lead companies to develop genetic tools to alter physical characteristics or traits that were previously unchangeable as opposed to therapies for diseases. They give little attention to the fact that new (and costly) medicines have value treating disease and extending useful life.
The section 'Dangers of Biotech Medicine' is devoted to products and treatments likely to result from the industry's quest for profits. Mentioned are genetic screening, life-extension therapies and organs derived from stem cells. The authors do not condemn these developments as necessarily harmful, but they suggest that the rich will be the only ones with access to such advancements and anticipate an ever-growing gap between haves and have-nots in American society based on access to health care through the current employer-based insurance system.
In the same section, the authors also ask whether we will become less individual if genetic medicine eventually allows us to tailor our very characters and intelligence to achieve the societal ideal. However, their discussion of what that ideal may be and whether genetic therapy really will affect character or intelligence leaves something to be desired. A related issue has been raised in recent years by the use of drugs for psychiatric disorders to treat what some view as unhappiness and others consider clinical depression. Similarly, the authors ask, will we pay less attention to living in a manner that prevents diseases if we know there are cures for things like obesity and alcohol-related liver cirrhosis, presuming that there are?
Finally, the authors worry about what may be wrought by biotechnology in the wrong hands. Areas of ignorance in genetic engineering, they point out, "remain vast." Scientists could unintentionally release into the environment organisms with a survival advantage over their wild counterparts that would run rampant through the ecosystem. This is to say nothing of what terrorists could release intentionally. Little new ground is covered here.
Unfortunately, all these truly important points are trapped within the authors' generally anti-capitalist view. The authors mire their arguments in the simplistic assumption that business is inherently evil and that the solution to these problems lies in a utopian state that ignores human nature and indeed all of evolution.
The Terrible Gift does not examineexcept as a necessary evilthe possibility that a for-profit system can also be responsible for most of the headway in recent therapeutic medicine.
The US biotech industry is the largest in the world by far. Despite the authors' claims that other industrialized nations consider "our developmental frenzy excessive," other countries, especially in Europe, are desperate to catch up, offering tax breaks and research funding to entrepreneurs brave enough to try to start companies. The reason for this success in the U.S. is the promise of profits from a huge market. The public should be equally aware of this truth if it wants to benefit from biotech.
Some of Carlson and Stimeling's statements will mislead uniformed readers. They write for example that "private sector-funded research on humans completely lacks the peer reviews and test-subject safeguards required in federally funded work." While institutions such as the US National Institutes of Health in Bethesda, Maryland, have their own set of requirements that may not apply to privately funded clinical trials, companies must apply to the US Food and Drug Administration with adequate preliminary data to conduct any human studies.
In discussing the evils of patenting genes, which is legal, the authors suggest that soon the entire human genome will be privately owned. In fact, it is not legally possible to patent an entire organism under current US law; nor is it possible to patent the entire human genome, which, for all practical purposes, is already in the public domain. The patent system, we should remember, exchanges limited exclusivity for innovation and is a core reason for the rapid progress of genetic medicine. Also, the patent system is a place where policy adjustments can be made. The authors themselves suggest that use-patents or patents on procedures replace patents on genesa view that is widely shared by many researchers in the field.
Carlson and Stimeling propose some specific changes to laws and policies, though most of the proposals, they admit, are unrealistic at best. Among them is the establishment of an international authority to enforce a moratorium on specific research.
In its conclusion, The Terrible Gift calls for reforming our health care system to eliminate billionaires and wipe away poor conditions in inner cities. This notion strays from more salient topics and will unnecessarily alienate readers not enamored of the authors' anti-capitalist views. The book would do enough if it focused on how to make therapeutic medicine a right for all citizens and how to think ahead as we explore the power of genetics. In its starry-eyed reach for the heavens, it stumbles.
Kathryn Ingle Calkins is a senior writer for BioCentury Publications.