Warning: Bioethics May Be Hazardous to Your Health

The moralists' attack on medical progress and patient freedom

Ronald Bailey from the August/September 1999 issue

(Page 2 of 4)

But while the availability of treatment may be the only relevant consideration for Annas, patients may have excellent reasons of their own for wanting the information that a biotech diagnostic test might offer them. Instead of debilitating patients, the results may well give them a chance to shape their lives, careers, and reproductive choices appropriately. A man who learns at age 20 that he will contract the dementia of Huntington's in his mid-40s might decide to lead an entirely different life, skipping the corporate grind for any number of alternatives. Or he might choose not to have children so as not to risk passing on the disease.

Telling someone that his chances of early-onset heart disease are greater than average may or may not make him feel worse, but it could well energize him to do something about it: more frequent heart sonograms, cholesterol-lowering drugs, exercise. Annas' view seems to be based on the assumption that everyone is a depressive fatalist.

Gregory Stock, the director of the UCLA Program on Medicine, Technology, and Society, finds the idea that bioethicists would withhold genetic test results from a patient "very offensive." Bioethicists, he says, have "a lack of faith in the individual, essentially."

Genetic testing is not only about disease. Commercial labs now offer cheap, simple, and highly accurate genetic paternity tests through the mail. Simply wipe the inside of a child's cheek with a cotton swab, send it in with $350 to $500, and the results are back in a week or so. The simplicity and lower costs have boosted the number of paternity tests from 80,000 in 1988 to more than 200,000 in 1998. Those seeking paternity tests may have good reason: One-third of DNA paternity tests indicate that the man being tested is not the biological father of the child in question.

Characteristically, bioethicist Eric Juengst, formerly the director of the ELSI program and now at Case Western Reserve, denounces the new paternity tests and asks, "what is the benefit to the child and society of seeking this information?"

"A lot of people have grown up with healthy and stable families in the ignorance of their parental status with no harm done," Juengst told the Dallas Morning News in 1998. He added the information "erodes the...unconditional acceptance of our children with all their surprising traits and maybe their genes." He added that "adoptees can testify that there's a lot more to being a family than just genetic links." Of course, adoptive parents choose to rear genetically unrelated children; cuckolded husbands may want the option.

More important, Juengst's view is a typical example of how the bioethical community elevates the presumed claims of society over the rights of individuals to choose. A similar claim is made by Arthur Caplan, the director of the Center for Bioethics at the University of Pennsylvania, who has been dubbed "the man to call on bioethics" and "America's most visible commentator on bioethics" by The Chronicle of Higher Education. In his 1997 book, Am I My Brother's Keeper?: The Ethical Frontiers of Medicine, Caplan makes the remarkable assertion that "assisted reproduction, unlike sexual reproduction, is a social enterprise. It requires the involvement of many third parties as well as significant amounts of social resources. In ordinary circumstances, individuals do not need society's help to make babies. In extraordinary circumstances, they can only do so with that help. What level of help society is willing to tolerate, provide, or pay for moves assisted reproduction beyond the boundaries of personal choice and individual liberty."

But couples using assisted reproductive technologies don't use "social resources"; they use personal resources. In fact, infertility treatments are not covered by most health insurance policies, so couples pay for treatments directly out of their own pockets. Also, it's not "society's help" that they seek but a doctor's help. And finally, society can "tolerate" a lot more than it is willing to "pay for."

Similarly, Daniel Callahan, co-founder of America's most prestigious bioethics think tank, the Hastings Center in Garrison, New York, argues in his 1998 book, False Hopes: Why America's Quest for Perfect Health Is A Recipe for Failure, that "coercive efforts to change unhealthy behavior" are justified because "bad individual health behavior...does harm to others, even if the health risk-takers pay their own health care costs. Money is diverted from other uses, personnel are diverted from other patients, and lives are wasted that could serve us all." Of course, every personal decision diverts money and personnel from one use to another. Callahan's logic leaves no room at all for individual freedom--everything belongs to "society."

Patient autonomy, some bioethicists argue, has gone too far; they rue what they call the "absolutizing of autonomy." Since the free market is the pre-eminent arena for exercising autonomy, many bioethicists harbor a deep antipathy toward it. Indeed, their distrust of the market is at the root of the bioethical opposition to new reproductive technologies.

Bioethicists used to worry about the moral standing of in vitro fertilization (IVF) and surrogate motherhood. Now many of them want to impose regulations on fertility clinics. Why? Caplan thinks "the free market is a dangerous, costly environment for making babies; caveat emptor is not a sufficient ethic to guide the creation of new lives." He further asserts in his book that "at a minimum, policies must be put in place stating who can use reproductive technologies, including statements about age, the existence of infertility, and the need for a stable, psychologically fit parent or parents."

Annas agrees. "Because of the commercial nature of the enterprise, I think there should be national regulation for the whole fertility industry," he says. "Society has an interest in children born through reproductive technology. We're the only country that has a market in human eggs, permits payment to surrogate mothers, and lets the private market dictate what's done."

The prestigious magazine Science jumped on the regulatory bandwagon last year, when it published an article noting that "unlike other areas of medical innovation, no comprehensive regulatory framework exists in the United States for alternative reproductive technologies." The authors, of course, recommended that "a federal oversight mechanism" be established.

But has this lack of federal oversight resulted in abuses? Caplan cites a few battles involving embryo custody or contested surrogacy, but the truth is that problems have been rare. As for safety, the birth defect rate for IVF babies (150,000 of them have been born) is lower than for children who are born in the normal way.

The vast majority of parents using IVF have gone away happy. It is the same in any market: There are a few operators who defraud their clients or treat them negligently, but in the overwhelming majority of transactions, both parties benefit. New reproductive technologies may be technically sophisticated, but there is nothing so unusual about them that standard ethical and legal principles cannot be used to restrain or punish unscrupulous or careless practitioners. Conventional child protection laws safeguard the rights of children born through IVF, just as they do for any children. Annas and Caplan do not make a strong case for federal oversight of the highly successful and innovative fertility industry.