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Getting in Nature’s Way

Scientifically advanced nations, most notably the US, seem on the verge of a new situation in which the traditional goals of doctors and others concerned with health care will be radically altered. The changes will be the result of increased understanding of the basic molecular mechanisms shared by all living things and a widened ability to devise technological methods by which those processes may be manipulated. More than a few observers of the biomedical scene believe that we are about to enter an age in which the improvement of human bodies and minds will become a primary goal in research and clinical treatment. Some of these observers are hopeful; some point to the possibilities of inherent and unforeseeable danger.

Until little more than a century ago, the only aims of medical care were the cure of disease and the relief of human suffering. But the definition of “human suffering” has gradually changed. We now find ourselves faced with the reality that it is no longer sufficient to prevent or treat sickness of the body or mind, but that physicians are expected to address increasing attention—and society’s dollars—to the millions who are dissatisfied with what nature and their own DNA have given them. Whether for rhinoplasty, botox injections, or a prescription for sex hormones, thousands of men and women daily make their way to doctors’ offices, intent on improving themselves. Not sick in any usual definition of the word, such discontented people would like to be better than they are, better than merely well. Even “better” may not be enough. That is why Sheila and David Rothman have called their cautionary new book The Pursuit of Perfection.

If the pronouncements of some futurists are to be believed, enhancements of human appearance and function will soon be so effective and commonplace that many will wonder in coming years why some critics scoffed when Gregory Stock, director of the Program on Medicine, Technology and Society at UCLA, called his book Redesigning Humans: Our Inevitable Genetic Future.1 The title of Stock’s opening chapter was “The Last Human,” by which he meant those few remaining whose bodies and minds have been formed by nature and nurture alone. As they age to more than double the biblical three score years and ten, the contented beneficiaries of the coming technologies may look back with scorn at the bioethicists and others who criticized William Haseltine, the biotech entrepreneur and CEO of Human Genome Sciences Incorporated, when he proclaimed to a New York Times reporter, “I believe our generation is the first to be able to map a possible route to individual immortality.”2

These are the outcomes envisioned by the pioneers who believe a biogenetic gold rush will soon take place. But every new technology carries the possibility of introducing unacceptable risk as well, which is why the subtitle of the Rothmans’ book is “The Promise and Perils of Medical Enhancement.” The Rothmans deal not with the future, but with such recently popular treatments as hormone replacement and cosmetic surgery. Showing how these have been evaluated may help to avoid mistakes in administering treatments. We should profit, say the Rothmans, from the errors of excessive certainty, popular zeal, and self-interest that have accompanied some recent innovations. And we would profit also from a frank assessment of the sometimes deliberate and sometimes inadvertent collusion between researchers, pharmaceutical companies, and practicing physicians that has enlarged the market for enhancement.

Sheila and David Rothman are social historians of medicine whose writings have brought attention to the ways in which communal, economic, and political forces combine to influence decisions that many of us naively thought were shaped only by the needs of patients and the progress of science. Two of their books have become minor classics among bioethicists because of their careful documentation and thoughtful, if partisan, analysis of events that led to significant changes in patient care as well as attitudes toward the medical profession. In their 1984 book The Willowbrook Wars: A Decade of Struggle for Social Justice,3 they described the lawsuits brought by parents against the Willowbrook State School, a home for retarded children and adults in New York City with notoriously wretched living conditions and an abusive staff. Like the inmates’ parents, the Rothmans believed the inmates could cope with life on the outside more effectively than the state authorities imagined. They showed that reforms would never have taken place if parents, public organizations, and politicians had not become involved. In their view, improvements in health care policy will only take place when the public demands them. It is not from within the medical profession that reform is accomplished, but from without.

In 1991, David Rothman published Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making,4 chronicling the rapid evolution, primarily between 1966 and 1976, of the doctor–patient relationship, which rendered it less paternalistic and gave patients more autonomy as it brought new participants into the process of health care. Much of the change came about as the result of the social upheavals of the late 1960s, which gave rise to increased demands for self-determination and hastened the establishment of bioethics as an academic discipline.5 The most forceful public expression of the principles of medical self-determination occurred with the Roe v. Wade decision of 1973, prohibiting state laws that restrict a woman’s right to abortion during the first trimester of pregnancy. By then, medical treatment was being influenced not only by increasingly insistent patients but by the courts, ethicists, the writings of social scientists and legal scholars, and an ever more knowledgeable public demanding to know how decisions concerning medical research and clinical care were actually being made.

Rothman argued that increasing pressures to carry out clinical research after World War II conflicted with medicine’s historic commitment to the individual patient. The size of the research establishment grew enormously in the two decades following the war, as the National Institutes of Health were rapidly enlarged and the federal government poured huge amounts of money into university health centers, most of which was directed toward clinical and laboratory investigation.6 Academic promotion came to depend far less on teaching and patient care and far more on the publication of papers in scholarly journals. The result was a weakening of the bond between doctor and patient, filtering down from the medical school faculties to the doctors they trained. The situation was aggravated when new technology raised ethical questions about prolonging life, sometimes pitting doctors against patients. In 1976 there was public clamor over the case of Karen Ann Quinlan, a comatose young woman whose doctors refused to honor her parents’ request to remove her breathing tube. They kept her alive by artificial means for thirteen months while her parents sued to be allowed to take her off the respirator.

Other developments combined to make a stranger of the doctor at the very bedside where he had once been the patient’s advocate and source of reassurance: the increasingly impersonal atmosphere in hospitals, the introduction of widespread third-party payment and managed care organizations, the creation of the new field of bioethics, and the growing involvement of the courts. The doctor’s influence was eroded by those newer strangers, among them ethicists, lawyers, insurers, and administrators of managed care. Though Rothman did not spell it out, each new participant in medical care brought about a further weakening of the personal responsibility of the doctor—the responsibility that was once the patient’s best guarantee of the concerned care that is the single most important element in successful clinical treatment. The Rothmans recognize, moreover, in view of the complexities of modern medicine, the increasing fragmentation of the profession into specialized units. A patient may be referred to several different doctors for a single complaint.

In turning their attention to the problem of medical enhancement, the Rothmans consider yet another burden on physicians whose prime motivation has been the thoughtful care of the sick. The fact is that enhancement, whether through female hormones or liposuction, has a variable record, not only having often failed in its intention, but too frequently having exposed patients to unanticipated hazards—such as infection, increased risk of cancer, and even death—or to complications that might have been predicted if many members of the public were not so quick to accept innovation. Scientists, pharmaceutical houses, popular magazines, advertising agencies, and even clinicians themselves are carried along by the excitement of research advances and the eagerness of potential consumers, as well as by the prospect of making money. An enthusiasm takes hold that sweeps caution before it.

These influences are, in the Rothmans’ words, “reinforced by a culture that prizes individual perfection and peak performance,” and they are concerned about its implications for the future:

The system, however, is out of balance, for no part of it has a stake in emphasizing or even communicating the dangers that are almost certain to accompany the innovation…. The record strongly suggests that technologies will emerge slowly and haltingly, some delivering benefits, others inflicting serious harm. Consumers will be compelled, personally and collectively, to make a series of exquisite choices, with very little data to guide them…. Healthy adults will have to calculate how much risk they are willing to accept in order to try to optimize a trait. Is it wise to undergo an intervention that promises to dramatically increase life span and disregard the risk that it might cause fatal disease and shorten life span?

It is this record of “slow and halting” innovation that the Rothmans address in their thoroughly documented and readable book. “What science creates medicine rapidly dispenses,” they warn, and this uncritical acceptance by both physician and consumer is precisely the problem.

The Rothmans begin their narrative with a long and complex account of female menopause and its discontents. Not long after the discovery of hormones around the turn of the twentieth century, medical scientists began to view these chemical compounds as the basic determinants of physiological functioning. The very word—hormone—is the clue not only to their action but to the hopes for their manipulation as well, being derived from the Greek verb hormaein, meaning “to excite” or “set in motion.” Extracts of animal testicles had already been thought (falsely, it was later shown) to restore youth and potency to aging men, and the search was soon on to discover the vital male force they contained, as well as an analogous female regenerative compound in the ovary.

When the female hormones called estrogens were identified, it seemed natural for physicians and women alike to promote their use in restoring the femininity lost following menopause. At first estrogens were prescribed to maintain youthful skin, hair, and outlook on life, and later to combat the distressing symptoms of menopause and its aftermath, such as hot flashes, insomnia, and loss of bone density. In time, statistical studies involving follow-up of many patients seemed to suggest that properly used hormone replacement therapy (HRT) would also decrease the incidence of heart disease, breast and genital tract cancer, and Alzheimer’s dementia.

  1. 1

    Houghton Mifflin, 2002.

  2. 2

    See Nicholas Wade, Life Script: How the Human Genome Discoveries Will Transform Medicine and Enhance Your Health (Simon and Schuster, 2001), p. 162.

  3. 3

    Harper and Row.

  4. 4

    Basic Books.

  5. 5

    See Albert R. Jonsen, A Short History of Medical Ethics (Oxford University Press, 2000).

  6. 6

    See Kenneth M. Ludmerer, Time to Heal: American Medical Education from the Turn of the Century to the Era of Managed Care (Oxford University Press, 1999).

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