We Shall Overcome, Somehow: Biomedicine, Health, and American Values
by Judith P. Swazey
Biomedical science and technology, our definitions of health, disease, and illness, and the kinds of medicine we practice, are not entirely objective, rational, and value free. Rather, they are shaped, often powerfully, by the culture of a society, and in turn help to shape the values, attitudes, and beliefs of the people living in a society. Two initial examples, one from Western society, which is particularly American in its character, and one from Japanese society, illustrate the ways that culture shapes medical technology and medical concepts. The first example has to do with the effort to design and build an artificial heart. As physician and historian of medicine Stanley J. Reiser has written about this quest:
"The machines we build are highly directive. For we build into them not only mechanical or electronic powers but our own aspirations. They have powerful symbolic meanings for us as well . . . Machines also can become key agents of a view developed through the Scientific Revolution that nature should be mastered, not lived with. What greater act of domination could we as human devise than to substitute a machine for the most conspicuous agent of life, the heart? . . . The artificial heart . . . is at once a metaphor of concern about unduly sustaining an aging population, the cost of medical care, plunging into technologic creation without adequate thought to consequences, and of an accumulation of means as an end in itself. It stands also as a metaphor of exhilaration about the wonders of our science and technology."(1)A second example is provided by anthropologist Emiko Ohnuki-Tierney, whose studies of illness and treatment in contemporary Japanese society document what she calls the "cultural transformations" of biomedical science and technology in different societies. She explains that the care provided in the Japanese hospitals she studied is "biomedical," but not Western, because it has "undergone 'Japanization' in its conceptual structure, meaning, and mode of delivery." In the Japanese health care system:
". . . hygienic behavior and its underlying concept, which are perceived and expressed in terms of biomedical germ theory, in fact are directly tied to the basic Japanese symbolic structure. Contemporary concepts of dirt and cleanliness derive from symbolic notions of purity and pollution, which have been basic themes of Japanese symbolic structure throughout history."(2)
It seems to be particularly difficult for most people in American society to grasp that many of our most prominent and cherished values and beliefs are not panhuman or transcultural. What this means in the realm of medicine, as in religion, politics, and other realms, is that we cannot simply parachute the values and ethical and legal principles that are involved in our medical research and care into another society and assume they will be welcomed, understood, and used. Our ideas about what it means to be a person, for example, are closely linked with one of our central values: individualism. Many aspects of our medical research and medical care, in turn, are shaped by the importance we give to meeting an individual's needs and wants. We also attach preeminent importance to the rights of the individual, as seen in our ethical and legal requirements that a person must give informed, voluntary consent to participate in research or receive treatment. If you had been raised in an African or Asian society, however, you would find our Western ideas about individualism, and what it means to be a person, extremely puzzling. As a Chinese scholar told Renée Fox and me, discussing why the Chinese do not share or readily grasp American views about informed consent and other patients' rights, "you need to understand that in China the individual is a social community." Similarly, Ohnuki-Tierney writes, "in the Japanese conception, an individual human cannot be conceived without reference to others, since humans exist only in the company of other humans."(3)
Now let me turn to some of the attitudes, beliefs, and values in contemporary American society that are involved in shaping why, what, and how we conduct our biomedical research and medical care. Our society has a rich and varied history, with many strands from which our cultural tapestry has been woven. Let me quickly list six of the values and beliefs in those cultural strands that have helped to shape our "we shall overcome" approach to biomedicine. Then, we'll explore their role in more detail by looking at some features of biotechnology and human genetics, and of transplantation and artificial organs. Six of our key cultural values are:
Biotechnology and Human Genetics
1. A strong belief in progress, change, and improvement, and perhaps even human perfectibility, particularly through the secular pursuits of science and technology.
2. Attitudes toward dying and death that involve a resistance to the fact of our mortality.
3. Hubris -- an arrogance about our ability to bend and eventually conquer nature.
4. A pursuit of health through medicine that blurs the lines between health, physical illness, happiness, and well-being.
5. A highly individualistic and particularistic orientation.
6. Reflecting, in part, our individualistically-oriented values, a staunch belief in entrepreneurism and a free market economy.
The interconnected fields of biotechnology and basic and applied human genetics bear deep imprints of cultural value commitments and assumptions, and in turn profoundly affect how we view and deal with many aspects of health, illness, and human nature. Because the actual or speculative implications of manipulating our genes are so profound, genetics also has spawned some of the most volatile social, legal, ethical, and public policy issues associated with biomedical research, technology, and medical practice.
To begin with, we need to remember that the tools and techniques of biotechnology, and much of the current work in human genetics, rest on the discoveries of molecular biology. This is important in terms of cultural shaping because a particular world view has guided and motivated molecular biologists and other "makers of the Biological Revolution." This "fundamental and deeply held" world view is a mechanistic and reductionistic one, which involves a "systematic attempt to reduce biology to the laws of physics and chemistry; organism to program; behavior to genes; life to reproduction; mind to matter; and culture to biology."(4)
The conviction that science will succeed in understanding and precisely controlling nature and the human species through these successive reductionisms is reflected in the titles of some of the major writings of molecular biologists. Horace Judson, for example, titled his major study of the field The Eighth Day of Creation, referring to the biblical eighth day of redemption after the apocalypse. One of the pioneers of molecular biology, Gunther Stent, wrote The Coming of the Golden Age: A View of the End of Progress, in which he discussed how the discovery of DNA and how to manipulate it had signaled an end to social and economic evolution. In a fascinating book called Gene Dreams, Robert Teitelman explores the aspirations of the biotechnology industry. The "new biotechnology," defined as the development and industrial use of recombinant DNA, cell fusion, and other techniques deriving from genetic engineering, began its explosive growth in the late 1970s. "Despite its youth," Teitelman writes, "the reality of biotechnology is often lost within a fog of its own enthralling mythology." The "mythos" that he portrays through a case study of one biotech company involves a very American fusion of values and beliefs. Its elements include, first, the reductionistic world view of molecular biology. Second, there has been a dream of progress, which at times has been like a messianic crusade, that cancer and other dread diseases soon will be cured by the "magic bullets" of interferon and other targeted drugs produced by biotechnology. Similarly, many believers in the powers of molecular biology and biotechnology foresee a drastic reduction and probably a complete elimination of hereditary diseases. Third, signaled by the fact that "the very word was invented on Wall Street," biotechnology has been a product of "the enthusiastic gospel of the entrepreneur," with academic biology "disgorging" hundreds of its "practitioners" to fledgling companies, that had their "umbilical cords" tied to Wall Street and venture capitalists.(5) Such convictions are typical of the American experience, which includes a series of utopian visions where new scientific knowledge and new technologies enable us to create a secular Garden of Eden.
Biotechnology's underlying value commitments, as well as its techniques and tools, have figured prominently in genetics research and applied human genetics. The ambitious, large-scale effort now under way to map the human genome, for example, is predicated on the secular, reductionistic world view of the modern Biological Revolution, and is infused with a Biblical language and imagery that conveys the belief in science's God-like ability to master nature. Thus, a computer program used to generate pieces of the genome has been named GENESIS, and the mapping effort referred to as "the quest for the Holy Grail" that will create "the Book of Man."
Based on past history, current practices, and future possibilities, the applications of our knowledge about human genetics, in areas such as screening and diagnostic testing, counseling, and gene therapy, have the potential to do both great good and great harm for individuals, groups, and society at large. Some of the value, ethical, and social policy issues involved in applied human genetics are illustrated by a recent book, Dangerous Diagnostics, co-authored by Dorothy Nelkin and Lawrence Tancredi. Their major thesis is that the "new diagnostics" -- tests that are being used or developed from research in genetics and the neurosciences -- have great promise for understanding and more effectively treating many diseases, but also great potential for uses or misuses that could create a new "biological underclass." The increased preoccupation with and use of diagnostic testing, they argue, "reflects two cultural tendencies in American society: the actuarial mind-set, reflected in the prevailing approach to problems of potential risk, and the related tendency to reduce these problems to biological or medical terms."(6)
One of the aspects of this biological reductionism and determinism that most concerns analysts like Nelkin and Tancredi is the social power of biological information. They are alarmed, for example, by signals that diagnostic genetic testing is being used to support the social values and policies of a new, more sophisticated version of eugenics. From the late-19th century until World War II and the medical atrocities committed by the Nazis in the name of racial purity, the social philosophy and purported "science" of eugenics exerted great appeal and public policy influence in America and Europe, promising to improve the human race's hereditary qualities through selective breeding of the socially fit or worthy and sterilization of the unfit.
"For the most part," as Nelkin and Tancredi note, "the new eugenics" that has surfaced over the past 20 years "has avoided generalizations about class and race, focusing instead on the individual benefits that follow from genetics research." Particular attention, and controversy, has focused on individual rights and responsibilities concerning "reproductive fitness." Some prominent geneticists, for example, have assumed, or urged, the enactment of policies to require, that people use "the . . . new biology to assure the quality of all babies . . . No parent will have the right to burden society with a malformed or mentally incompetent child."(7) To foster this drive for genetically "healthy" or fit persons, there are organizations such as the Eugenics Special Interest Group, founded in 1982. Its objectives are to "provide a communications network for all people committed to enhancing human genetic quality; to develop sound, innovative projects to produce eugenic benefit; . . . and to enlighten the public about the unique benefit of eugenics with the intention of ultimately influencing public policy." Though nominally concerned about the positive rather than negative applications of the new genetic knowledge and techniques, disquieting references to the "pollution of the gene pool," "genetically healthy societies," and "optimal genetic strategies" have crept into the scientific literature of the l980s and l990s.
What has long concerned me and like-minded colleagues is the way that some of the uses of genetics reflect and reinforce a value system that contains an intolerance for "imperfection." In this case, the concerns have to do with what we are defining as health and fitness, and the types of powerful social mechanisms we are allowing to be used to monitor, sanction, or otherwise control those who deviate from the norms. One goal of some participants in the human genome mapping project, and of the biotechnology industry, is to be able to analyze and store a person's genetic composition at birth, so that, along with the many other identifiers each of us now has on file with various social agencies, we would each be recorded in a "genetic profile" registry. Short of that Promethean or Faustian achievement, genetic diagnostic testing already is in ever-increasing use. While not overly given to Orwellian fears, I agree with Nelkin and Tancredi's observation and warning that:
". . . [t]esting for the biological origins of disease can affect our concepts of social equality, justice, and privacy, and our ideas about choice and free will . . . The most important implication of biological testing is the risk of expanding the number of people who simply do not fit . . . What is to be defined as normal or abnormal, able or disabled, healthy or diseased? And whose yardstick should prevail? . . . [E]ven if there was perfect predictive information, we should not underestimate the dangers of a new eugenics. If biological tests are used to conform people to rigid institutional norms, we risk reducing social tolerance for the variation in human experience. We risk increasing the number of people defined as unemployable, uneducable, or uninsurable. We risk creating a biologic underclass."(8)Organ Replacement and the Meaning of Medical Progress
Years of concerns about the increasing amounts of money being spent for medical care in the United States, questions about what those dollars are buying in terms of health status and medical outcomes, and the failure of various cost containment strategies, have begun to focus serious attention on the subject of rationing. We have always engaged in one form of health care rationing, using a "green screen" of ability to pay to determine who gets access to many types of services. Now, with great unease, people are seriously discussing whether we need to, and can, develop some sort on nonprice rationing system at state or national levels.
Some of the most thoughtful and thought-provoking thinking and writing on the subject of rationing has been done recently by philosopher and bioethicist Daniel Callahan. His work, I believe, is seminal because he is articulating the basic value questions that urgently need to be addressed as we think about matters such as rationing health care, about adopting some form of national health insurance, or even engaging in more of the band-aid tinkering that has characterized our cost containment efforts to date. He argues that we are wrestling with two fundamental dilemmas in our health care system, both of which are rooted in the values of American society. One dilemma is economic and political in nature. How can we contain costs and also live up to our espoused belief in equality by expanding services and costs to meet the health care needs of the indigent and underinsured? The second dilemma is a moral one involving the role of health in our lives. On the one hand, we have the realities of illness, aging, and death, and many non-medical individual and social needs and priorities that we want to meet. On the other hand, we cling to an expansive vision of conquering disease and illness and achieving a state of complete physical, mental, and social well-being through infinite medical progress.
Daniel Callahan is among those who are convinced that we need to openly ration health care by establishing reasoned priorities for the medical goods and services we will provide, but this rationing effort, he believes passionately, must be preceded by some fundamental value changes in our society. He thinks that three value changes are particularly essential. First, we must curb our aspirations for unlimited medical progress, and in so doing relinquish our utopian belief in what the distinguished microbiologist Rene Dubos called the "mirage of health." "Complete and lasting freedom from disease," Dubos wrote 30 years ago, "is but a dream remembered from imaginings of a Garden of Eden designed for the welfare of man." Second, Callahan has come to believe that we must place a greater emphasis on societal needs compared to our present emphasis on individual needs, wants, and rights, on public compared to personal health, and on the common good rather than the welfare of the individual. In this context, the value question becomes "how much health care is needed for the overall good or welfare of society?" Third, he argues that we need to place a greater value on the caring role of medicine and its practitioners, in contrast to the human and financial efforts we now devote to trying to cure all disease, prolong all lives, and overcome aging and death.(9)
Callahan's views about the values shaping medical care in our society are very much in accord with my own deepening sociological and moral concerns. These concerns have evolved principally through the many years as a field worker studying the development and use of organ transplants, the artificial kidney, and the artificial heart. Foremost among the people whose "reality" I have been allowed to share in this field work are the physicians and nurses, patients, and families who have been the chief actors in the "experiments perilous" through which transplants, dialysis, and the quest for an artificial heart have been advanced. The field work involved close contact with the grave illnesses and frequent deaths that these people mutually faced, with the suffering and despair, the hope and renewal, the "breakthroughs," and the despair and disappointments that they have experienced, and with the ways of navigating and coping that they have forged. Through these many years of field work experience, there have been aspects of organ replacement efforts that I have always found especially troubling. Prominent among them have been some components of the "courage to fail" value system endemic in transplant physicians and artificial organ pioneers. This ethos includes a classically American frontier outlook: heroic, pioneering, adventurous, optimistic, and determined. It also involves a bellicose, "death is the enemy" perspective; a rescue-oriented and often zealous determination to maintain life at any cost; and a relentless, hubris-ridden refusal to accept limits.
Another early source of unease was my conviction that, if our society is to engage in such endeavors, we have a moral obligation to ensure equitable access to organ replacement. Without such equality, one observes again and again how specifically designated individuals have been privileged to obtain needed organs and funding by wielding special emotional, media, political, and economic resources available to them. More importantly, I have been increasingly concerned that all the professional and public consideration given to transplantation and artificial organs is helping to divert attention and resources away from far more basic inequities in our health care system.
In Fall 1988, my colleague Renée Fox and I completed what became a detailed and profoundly disturbing five-year study of the development and experimental use of the Jarvik artificial heart.(10) It was this research project, and some of the participant observation experiences associated with it, which brought us to wonder, as does Dan Callahan, "what kind of life" our values are driving us to seek, and whether our society can accept "limits to medical progress." It is not that we are therapeutic nihilists, or that we fail to appreciate the impressive medical, surgical, and technological progress that has been made with transplants and artificial organs during the past three decades. We have, however, come to feel that the missionary-like ardor about artificial and transplantable organs that now exists, the over-idealization of the quality and duration of life that it can ensue, and the seemingly limitless attempts to procure and implant organs that are currently taking place, have gotten out of hand. In the words of a transplant nurse-specialist, "Perhaps the most important issue in a critical examination of transplantation involves the need and criteria for responsible decisions about when to stop, when to say 'enough is enough' to the transplant process."(11)
In our view, the field of organ replacement now epitomizes a very different and powerful tendency in American health care, and in the value and belief system of our society's culture: a pervasive reluctance to accept the biological and human condition limits imposed by the aging process to which we are all subject. It seems that much of the current organ replacement endeavors represent an obdurate, publicly theatricalized refusal to accept these limitations. Rereading Ramsey's, The Patient as Person, twenty years after it was first published, deeply impresses me by how prophetic it has proven to be with respect to our social and cultural problems in accepting limits on organ replacement and the care of dying patients. He wrote:
"If it is not possible for modern men, when the one 'lone hope' is gone, to believe that this is not the end of hope, perhaps we might share the conviction of Socrates, who said, 'Now it is time that we were going, I to die and you to live, but which of us has the happier prospect, is unknown to anyone but God.' That outlook, too, might save men and doctors today from the triumphalist temptation to slash and suture our way to eternal life."(12)
Above all, it is the growing intensity and expansion of the drive to sustain life and "rebuild people" through organ replacement that has progressively alienated Renée Fox and me. Our society seems to have accepted, in an unquestioning and even celebrated way, the merits of creating larger and larger numbers of what New York Times reporter Lawrence Altmann graphically calls "patchwork people," whose quality of life often is dubious at best. Concomitantly, the determination to procure organs has become so powerful that Fox and I feel there is an almost predatory obliviousness to "where [the] organs come from, and how [the] donors died." We share George Annas' indignation over what he terms the "denial of reality" that underlies the current policy of avidly promoting organ donation and transplantation, without publicly acknowledging the kinds of deaths on which they are based.(13)
Since the 1950s, transplantation, which involves obtaining an organ from a just deceased person or, in the case of kidneys, a living donor, has been defined and promoted as "a gift of life." Yet, there is a distinct tendency to minimize the importance of the "gift" relationship, and to systematically ignore or forget what was previously known about giver. Nowhere is this tendency more apparent than in the movement toward what some lawyers, economists, and policy analysts call the "commodification" and "marketification" of the "gift of life," involving various proposals to develop commercial markets in "HBPs" -- human body parts.
Most importantly, as poverty, homelessness, and lack of access to health care increase in our affluent country, it does not seem justifiable for us to be devoting so much of our intellectual energy and financial resources to the replacement of human organs. Health policy analyst, Emily Friedman has written that a "silent, largely invisible epidemic [of] medical indigence" has become the most tragically serious health care problem in the United States; that "the noncoverage of the uninsured poor and their resultant lack of access [to health care] affect every American;" and that ignoring or accepting this situation puts us "all at risk," because "a society that forces its most vulnerable and needy members to beg for crumbs of care, or to go without care until they are dying, harms itself [and its moral fabric] even more than it harms the victims of its cruelty."(14) Allowing ourselves to become too caught up in problems like the shortage of transplantable organs, while health care continues to be defined as a private consumption rather than a social good in American society, with the consequence that millions of people do not have even minimally decent care, is medically and morally intolerable. The predicament of these deprived and fragile members of our society has changed the ethical context of transplantation and artificial organs. In this context, organ replacement illustrates an overly-zealous medical progress project and societal commitment to endlessly perpetuate life by repairing and rebuilding people -- an unexamined excess that can, and already has, brought social, cultural, spiritual harm and human suffering in its wake.
(1) Stanley Reiser, "The Machine as Means and End: The Clinical Introduction of the Artificial Heart," in M. Shaw, editor, After Barney Clark: Reflections on the Utah Artificial Heart Program (Austin: University of Texas Press, 1984), pp. 172-173.
(3) Emiko Ohnuki-Tierney, "Cultural Transformations of Biomedicine in Japan: Hospitalization in Contemporary Japan," International Journal of Technology Assessment in Health Care (2, 1986): 239. For further analysis of how a culture's values about individualism and community shape medical ethics, see Renée C. Fox and Judith P. Swazey, "Medical Morality is Not Bioethics: Medical Ethics in China and the United States," Perspectives in Biology and Medicine (17, 1984): 336-360.
(5) Robert Teitelman, Gene Dreams: Wall Street, Academia, and the Rise of Biotechnology (New York: Basic Books, 1989). Also see Teitelman's more recent Profits of Science: The American Marriage of Business and Technology (New York: Basic Books, 1994).
(9) Daniel Callahan, "Allocating Health Care Resources: Can We Change Our Way of Life?" keynote address, Vermont Health Decisions Conference, Rutland, Vermont, September, 1990; "Modernizing Mortality: Medical Progress and the Good Society," Hastings Center Report (20, 1990): 28-32; "Rationing Medical Progress: The Way to Affordable Health Care," New England Journal of Medicine (322, 1990): 1810-1813.