Bioethics and Medical Issues in Literature, in the Exploring Social Issues through Literature series, defines specific bioethical and medical issues, gives an overview of their development, and analyzes them in literature. In addition, it relates current perspectives on these issues and cites specific ongoing concerns. The 10 works of fiction analyzed in this book for their relevance to contemporary social issues succeed because their authors placed characters in situations beyond the realm of what was known. That is, what science had not yet broached, their writings explored. The selections spanning 200 years from Mary Shelley's romantic British novel Frankenstein, or, The Modern Prometheus, in the Industrial Revolution, to Margaret Edson's Modern American play Wit, in today's Biotechnical Revolution, show that as much as things seem to change, the same fears expressed long ago persist. In particular, the question concerning the advancement of science taking precedence over individual human rights looms large. The authors have used creative license in their fiction to explore this important social issue as well as others that continue to form and test us. As the chain ofevents since the age ofmodern medicine shows, we have much to learn from the past, which literature encapsulates.
In five thematic chapters, bioethics and medical issues revealing the human character and condition are set into the 10 fictional works as follows. In chapter 1, "Technology's Creature," the two works, Mary Shelley's Frankenstein and Nathaniel Hawthorne's "Rappaccini's
Daughter," have been warning us for a long time about scientific hubris and unmonitored research. In Frankenstein a stealthy young scientist invents life and unleashes a monster; in "Rappaccini's Daughter" an unconscionable father turns his innocent daughter into an experiment. While Shelley's nineteenth-century lifetime highlights other specific issues, such as women's rights and health-care concerns as documented in incidents of puerperal fever, currently Frankenstein is being invoked as a cautionary tale. Like Victor Frankenstein, are stem cell scientists playing God in trying to create and to alter life, with the outcome unknown? Or, are these fears unfounded, outweighed by the potential benefit to mankind? Hawthorne's work further elaborates on the scientific mind—in particular, rivalry and abuse of the Hippocratic tenet, "First, to do no harm," two concerns applicable in today's race to achieve.
As the United States entered the brave new world of stem cell research and cloning, in 2002 President George W. Bush appointed an 18-member Council on Bioethics. It is made up of medical doctors, lawyers, philosophers, theologians, biomedical and social scientists, policy experts, and medical ethicists to advise him on ethical issues arising from biomedical and technological advances in science. The council's reports also influence the U.S. Congress, future legislation, and government funding. Called "the conscience of the country," the council has deliberated on many issues, but on April 1, 2004, it released its long-anticipated recommendations on stem cell research. The council reached consensus in recommending a ban on cloning-to-produce-children and a four-year moratorium on cloning-for-biomedical-research. It would not outlaw human embryonic stem cell research altogether, saying it needs time to review current practices. In federally funded research the council calls for more self-regulation and a ban on "outlying experimental practices." Trying to reach a compromise, President Bush approved of therapeutic stem cell research on existing embryos up to 14 days maturity discarded from in vitro fertilization clinics, which are in short supply and contamination may limit their use. He also reaffirmed his moratorium, following the lead of the council, on spending federal funds to create new embryos for reproductive human cloning research or that which might result in the development of a full-term baby.
The report is troubling to many antiabortion groups, tying into the fundamental debate on determining when life begins. Conversely, the report is heralded by those who are looking for cures. Researchers grow from stem cells replacement muscle and nerve tissues that could be used in a damaged heart or as remedies in specific diseases like cystic fibrosis. The council, furthermore, has asked for a temporary moratorium on research into creating hybrid embryos using human egg and animal sperm and vice versa and gestating human embryos in animal bodies. It ponders the ethics of buying, selling, or patenting human embryos, which is of viable commercial interest. Concerns linger about the kind of creatures technology can create, and the council wishes to discourage rogue researchers intent on cloning embryos grown specifically for harvesting human parts or into a full-term human baby.
The President's Council on Bioethics will continue to debate these and other issues, including, Is research cloning in humans morally justifiable in principle? Maintaining human dignity—asking what does it mean to be human—is a chief concern. Nonetheless, two weeks before the council's report, what was once theoretical was taken into the realm of reality on February 11, 2004, when South Korean scientists announced they had cloned human embryos. Using the same somatic cell nuclear transfer technology applied to the 1996 cloning of Dolly the sheep in Scotland, they produced human embryos solely for the purpose of harvesting the all-important therapeutic stem cells. Clearly the genie has left the bottle—the age of cloning has begun—with this achievement demonstrating that science cannot be stopped. Nonetheless, it raises the specter of Frankenscience, a scientific creation that has the potential to destroy its creator. The clear and present danger is that technological achievement is running well ahead of public policy, reinvigorating political, religious, and ethical debates. While some U.S. states proceed without government funds and approval, and other countries are on a swift march into scientific discoveries, the 2005 U.S. federal budget—reflecting drains from wartime, national health-care costs, and worldwide disease and disaster relief—continues to limit funds for scientific research and education. In summary, a few issues chapter 1 highlights are: problems with the stealth of scientific research; the fear of technology, especially the unknown outcome of scientists playing God and of developing technology's creature; and the inherent problem in seeking perfection and in attempts to develop a utopia (Who decides?).
It is not a great leap into chapter 2, "A Brave New World," to discuss Huxley's description of dispassionate eugenics in Brave New World and Cook's imagined commercial avarice in the human transplant industry in Coma. The former predates the horrors documented in the 1940s U.S. sterilization movement and subsequently in the Nazi war experi ments. The latter predicts the continuing shortage of human transplant organs and problems with assignment, imagining a horrific solution. In both novels individuality is sacrificed for the greater good. In Brave New World—in order to restore order after anthrax attacks—the government controls and conditions its people, who lack free will. It shows the inevitable harm from genetically determining a society and psychologically conforming it with pharmaceuticals from birth through the end of life. The 1932 novel sheds light on our twenty-first century brave new world of genetic engineering and cloning, underscoring the technical ability to create and to manipulate human life that runs well ahead of public policy. Science has the ability to alter human DNA, for better or worse. Now, along with the reality of these new and exciting biotechnologies that prevent and cure disease may come ethical problems. In a Huxleyan manner, will high-tech eugenics promote castelike discrimination and undermine equality?
Similarly, Cook's gruesome theme of harvesting organs from unwilling donors, as depicted in his medical thriller Coma, is not only possible but even probable, he says. He spotlights research advanced in secret and the dangerous mixture of drug-addicted doctors and dehumanized patients leading to medical mistakes. The legal procurement and fair dissemination of human organs in the transplant industry, as well as the definition of brain death, are central issues in Coma,. The thriving international black market brokering the organs of the poor to save the lives of the rich is addressed in Michael Finkel's article "Complications." Chapter 2 also discusses the many myths and inadequate procedures that inhibit the transplant process and the informed consent guidelines governing it. Every year 85,000 anxious Americans wait for lifesaving organs, and 6,000 die before they arrive. The National Organ Transplant Act bans the purchase or sale of human organs because, understandably, only the rich would benefit. Some states offer living donor tax deductions to offset expenses; other states are proposing laws to reimburse the expenses of living donors and of the families of deceased donors. In recent times xenotransplantation, the use of animal tissues and organs in humans, is a commonplace alternative, but rejection and cross-species infection are factors. The technology is here for growing body parts, such as kidneys and corneas, for transplantation. But will they be available to everyone in need? In this brave new world, biotechnology promises to reshape nature as we know it. And, indeed, recombinant gene therapies can even alter human DNA. Anthropologists ponder how benefits accruing from reproductive innovations will compare to natural selection? The wide spread fear of the unknown, as magnified in Michael Crichton's 1990 depiction of chaos theory in Jurassic Park, should accelerate public debate.
In chapter 3, "Contagions/Isolations," Albert Camus's The Plague reveals a plague-stricken community's dynamics, especially after a self-sacrificing doctor isolated from the rest of the world, must deal with medical issues. In the unrelenting nature of plague his medical ethics are challenged, provoking philosophical discussions about man's morality in an atmosphere of every-man-for-himself. It also defines true heroism, a term assigned freely today. The Plague highlights political, social, economic, and religious issues that arise from a medical emergency, offering an ideal segue into the next section, David Feldshuh's Miss Evers' Boys, which describes a baseline syphilis study initiated before effective treatments were available. Richard A. Schweder in "Tuskegee Re-Examined" holds a contemporary view that hindsight moralizing will not heal wounds and recalls that paternalism—the withholding of information from patients—was a standard of care for blacks and whites in the 1930s. The Public Health Service medical professionals should not be characterized as racist evildoers, he says, especially because the 1950s standard of care including penicillin had not proved effective in a late-term syphilitic's quality of life or morbidity. The idea of the prejudicial application of medical treatments is extended into the reality of Nazi war experiments and into our international age of AIDS. Both the Nazi war crimes resulting in the Nuremberg Code and the Tuskegee Syphilis Study influencing the Belmont Report shed light on human subject research protocols, including informed consent, evolving into the creation of institutional review boards (IRBs). With the new age ushering in dazzling possibilities such as pharmaceuticals and gene therapies that alter who the person is, IRB watchdogs must continually ask whether research contributes to the general good more than it devalues individual human life.
The focus of chapter 3 is to show that plague—all infectious dis-ease—which antedates humans, continues to determine the course of history and is never gone for good. The solid evidence of this appears in daily headlines warning of recent global outbreaks of polio, influenza, tuberculosis, the newly discovered SARS, and the yet to be known. Only now are the worldwide ramifications of AIDS—first identified in the 1970s—being felt. Medications commonly administered in the United States are not cost-effective in other countries, creating an upsurge in orphans, an abhorrence stressed during World AIDS
Day. Otherwise, critics say the media's focusing attention on sporadic incidents of mad cow disease takes the emphasis off of the biggest food-borne risks from salmonella, E. coli, and other bacteria killing thousands every year. While it behooves everyone to be informed health-care consumers, the downside to media overexposure is seen in the current population of "worried well" neurotics who self-diagnose, always expectant of the next emerging disease. Fearful overreaction to sensationalized reportage and commercial drug advertising taxes doctors and other therapeutic resources. The Plague, in which the media falsely report and withhold information as well as advertise false cures, and Miss Evers' Boys, in which a 1972 whistleblower ended the study, both raise questions about the increasingly symbiotic relationship between the media and twenty-first century medicine. The American public looks to medical news reports on television and in newspapers. It devours medical thriller novels and absorbs often sensationalized plot-lines in fictionalized television shows. In addition, the Centers for Disease Control and Prevention (CDC) in Atlanta and other governmental agencies rely on their collaboration with the media to report legitimate stories as well as to advance agendas.
In summary, the key to controlling infectious disease outbreaks is early detection, establishment of vaccine protocols, and public education. Hygiene and quarantine may be the first line of defense in containing infectious diseases. Moreover, understanding how they originate and generate, as in insect-animal-human transference, is crucial. No matter what firewalls are put up, however, the truth espoused in chapter 3 is that infectious disease, recorded since the earliest historical accounts, has proved indomitable. Epidemiologists continually try to keep up with the next generation of diseases. They maintain a hypervigilance on known pathogens coming out of hiding somewhere in the world after lying dormant for decades and on those recombining into superbugs.
The main theme in chapter 4, "Illness and Culture," is that illness is often culture-specific and that diagnostic methods and treatment options change over the years. America's path has been long and arduous since the early days when the mentally ill and retarded roamed the streets. There are now many different approaches to diagnosing and treating the mentally ill, such as using brain scans and DNA analysis as well as using psychotherapy and drugs. Ironically, many who should seek help (schizophrenics, for instance) find themselves homeless and untreated since the National Institute ofMental Health, created in 1946, activated human rights laws including privacy and autonomy.
The two works in this chapter, Ken Kesey's One Flew Over the Cuckoo's Nest and Alice Walker's Possessing the Secret of Joy, continue to influence twenty-first-century medical issues and ethics by describing the cultural origins of mental illness. In 1962 Kesey horrified readers with his graphic depictions of electroshock treatments and lobotomy, causing the mental health industry to rethink its approaches. These so-called barbaric methods are back into use for treating depression when drugs and psychotherapy are ineffective.
Nonetheless, the new age of pharmaceuticals provides a variety of magic bullet cures. Some drugs, however, along with effectively treating symptoms, may change the recipient's personality. For instance, a new therapeutic forgetting drug is in clinical trials. It has the potential to eliminate disabling emotions such as fear and guilt in soldiers or rape victims. Opponents argue that blocking post-traumatic stress disorders (PTSDs) reduces capacity for empathy, reshaping who that person is as in soma administered in Huxley's Brave New World. Proponents believe the drug, by eliminating a person's crippling emotions, restores quality of life (Henig, "The Quest to Forget"). Should the Federal Drug Administration (FDA) approve the drug after more extensive study, bioethicists will have to determine whether the drug's benefits outweigh the side effects and risks, especially in the 70 percent of PTSD patients who eventually recover anyway. In the nineteenth century Ralph Waldo Emerson expressed his belief that there is innate value in all experience, whether positive or negative, because it defines who we are and how we interact in the world.
In Possessing the Secret of Joy Walker illustrates how our views on normalcy depend on the culture and time in which we live. Actions deemed criminally insane and unethical in one area of the world are culturally entrenched in another. The World Health Organization estimates that 100 million women worldwide have undergone female genital mutilation (FGM), a difficult issue to explore. The African culture Walker depicts has socially constructed a practice with detrimental mental and physical health consequences, linking health, education, and human rights. Possessing the Secret of Joy describes women subjugated to fundamentalist beliefs and denied equal protection under the law, even though the Universal Declaration of Human Rights states human rights are inalienable: "No one shall be subjected to torture or to cruel, inhuman, or degrading treatment or punishment" (United Nations General Assembly Resolution, 1948). Changing ritualistic behavior takes several generations, however, a fact understood by an Italian surgeon who offered to "safely" perform the rite, preventing the germ-laden hut-butchering of girls. He caused an international outrage. Showing that education is the key, 200 FGM practitioners attended the 2004 International Women's Day in Kenya, announced they had abandoned the practice, and vowed to fight it. Although the 2002 Children's Act outlaws the practice, in northeastern Kenya 98 percent of the girls between ages five and nine undergo radical FGM. Local magistrates levy light punishment, if any, for violations. Kesey and Walker illustrate the long-term detrimental consequences of socially constructed practices. The historical perspectives in chapter 4 build worldwide awareness on the value of education.
At last, the intent of chapter 5, "End of Life—Disease and Death," is to demonstrate, in the words of Thomas Mann, that "all interest in disease and death is only another expression of interest in life" (The Magic Mountain, 495). Two radically different protagonists give views of heart disease and ovarian cancer, respectively, in John Updike's Rabbit at Rest and Margaret Edson's Wit. In the former, Rabbit Angstrom, who is filled with male angst, does not engender sympathy; however, in the latter, Dr. Vivian Bearing, who is subjected to technology and the inhumanity of research protocols, experiences a nurse's kindness. Other topics developed in Rabbit at Rest include the obesity epidemic and the popularity of gastric bypass operations, the Me Generation and family values, and cocaine addiction and therapy. Immense strides have been made against heart disease, including gene therapy, transplants, and even cloned replacement parts. New early screening techniques are changing prognoses. Less efficient, it seems, are efforts to educate the general public about preventive measures, including maintaining an ideal weight and blood pressure, and lessening stress. Gastric bypass operations, while often effective, include risks from wound infections to death. In 2004 the U.S. Surgeon General declared obesity an epidemic, and second only to smoking as the leading cause ofpre-ventable death. At the same time, in the United States 13 million children go to bed hungry most nights.
In the engaging play Wit, Edson looks at cancer, research, and ethics. Once considered the silent killer because of its often late detection, ovarian cancer, the subject of Wit, now has more clearly defined symptoms making earlier detection and treatment possible. In fact, many other types of cancer, once a death sentence, often may be cured if detected early. Or, rather than using toxic drugs, cancer may be left uncured and treated like a chronic illness with surgery and a new generation of drugs. In 2003 the National Cancer Institute reported cancer killed 556,000 people in the United States; in 2004 8.9
million people were living with it. The drive to find a cure fuels scientific research. Breakthroughs include shutting off the blood supply to tumors, cancer vaccines, and new-age cocktails or combination drugs. With heightened screening and gene diagnosis, new drugs even tackle precancerous phases. Wit also addresses psychic and physical pain. With greater understanding of their similarities and differences come new therapies. For instance, brain imaging techniques reveal a cross talk between the two, leading to new approaches, including anxiety medications.
In an analysis of Wit, the duties and responsibilities of medical professionals are scrutinized as they interact with Dr. Bearing during the last phase of her life as a research volunteer. Human research ethics evolved from twentieth-century concerns over yellow fever treatments, having deep ethical roots in Hippocrates' tenet "First, to do no harm." The system for protecting human research participants improved following the World War II Nazi experiments on Jews, set out in an international guide called the Nuremberg Code of Ethics. Later, the effects of the experimental drug thalidomide administered to pregnant women, which caused severe birth defects, led to a better formulation of informed consent in clinical trials. A primary concern of the research community, which also polices itself, is to maintain the human dignity of research volunteers. Good science and good ethics should go hand in hand. Outrage at the Tuskegee Syphilis Study prompted the National Research Act of l974, which in turn established local-level IRBs and the National Commission for the Study of Human Research. The important moral and social responsibility integral to human research is summarized in the Belmont Report, which sets out the basic principles for research ethics: respect for persons, beneficence, and justice. In addition, Wit highlights intangible qualities such as kindness and hope as they relate to patient care and quality of life.
The 10 works in Bioethics and Medical Issues in Literature, ranging in scope from a classical novel to a contemporary play, teach lessons in a wide range of medical and social issues. They cast a light on rapidly advancing technology, the need for public education, and the urgency of health-care reform. Science education now includes not only education in science and technology but also in social responsibility, often taught with literature. As new science and dazzling technology continue to contribute to Western medicine, literature reminds us of the human condition. Uncovering the pathophysiology of disease and solving the puzzle of its progression go hand in hand with acquiring the moral ability to apply this knowledge to sick and suffering humans.
Twenty-first-century medicine promises many great things in nano-technology, imaging techniques that reduce the need for invasive surgery, and gene analysis and therapy. Again, humans are the basis of these enterprises. At last, the primary lesson taught throughout this book that should feel highlighted from the first page to the last is the need to balance advancing science and technology with individual human rights as well as responsibilities.
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