BIOETHICS

Bioethics is a broad subject connecting advances in biological and medical science with moral concerns. Medical ethics is one large part of bioethics but by no means the only part. Bioethics has grown as a discipline precisely as science and technology have increasingly demonstrated that human beings are biological beings. Scientists have mapped the human genome and scanned the human brain. Researchers have evermore precisely shown the neural correlates of mental states, the genetic roots of behavior and illness. Through these developments, serious new ethical questions have been raised about studying and even modifying human biology. Bioengineering has also been used to replace parts of the human body that are no longer working or working well: dialysis kidney function, pacemakers stabilize irregular heartbeat, and respirators keep lungs pumping oxygen. Bioethics as a field is rooted in advances in technology just as is the case with the narrower field of medical ethics.

Broadly speaking, four sorts of issues in bioethics transcend the more restricted confines of medical ethics and the more global issues of environmental ethics. First are those that involve the tension between the needs of the few and possible risks to the many. The best example of this is biomedical research and the issues it poses of need, risk, consent, validity, and conflicts of interest. A second large set of issues relates the present to the future. How much and how quickly should humans change human biological nature with such technologies as cloning, stem cell research, genetic screening, selection, and therapy? A third set has to do with the response to pandemics such as AIDS and emerging "diseases of globalization" such as West Nile virus in the United States. The final set involves issues rooted in the way in which sophisticated technology enhances the disparity between rich and poor globally and provides opportunities for severe exploitation of the poorest of the poor.

Individuals and Society

Biomedical research, especially since the mid-twentieth century, has dramatically transformed medicine. The research itself, however, has been controversial and led to major national commissions reviewing the process of consent in the research setting as well as the establishment of federal oversight of clinical research funded by the government. The gold standard for research has always been the classic "double-blind" study in which matched sets of patients are given either the old standard treatment or the new treatment. Researchers do not know which patients are given which treatment so their conclusions about the efficacy of the new treatment supposedly cannot be biased by such knowledge.

But this can put health care professionals in a seriously compromising position. At some point before the end of the study a researcher may have reached a preliminary conclusion about which treatment is best. As a health care professional this person would appear obligated to provide the best available care for any patient. As a researcher, however, the individual should not destroy a study by stopping it too soon. Preliminary results are often superseded by longer-term studies. An example from the early 2000s is the case of hormone replacement therapy for postmenopausal women. The tension between individual and societal benefit in research is inevitable. What may benefit a few may raise risks for many.

For example, since the early 1990s many AIDS patients have demanded faster access to possible treatments, including vaccines that might give them short-term comfort. The AIDS community has argued that they have nothing to lose from looser access to unproven treatments or vaccines. They have a fatal disease and should, therefore, have access to any treatment that might, even hypothetically, offer some benefit even where no long term cure for AIDS is on the horizon. But mass access to unproven therapies can be dangerous for the many. A vaccine based on the use of live HIV could backfire and spread the disease. Treatments may work for a short time and encourage risky sexual behavior. If the virus then mutates around the treatment, then the result of not fully testing the treatment before widely using it may be increased suffering.

For the persons who are fatally ill, access to new therapeutic technology essentially adds no new risk to their situation. If the therapy does not work or even spreads the disease, they are no worse off. For society at large, however, the risk is much different.

The same tension between the individual and the group can also be seen in reverse. For example, if a mentally ill patient is doing well on a specific combination of medicine, it may be dangerous to this patient's health to change to a new experimental medication. Yet without studies that accurately compare older therapies with newer ones the larger community of patients that needs to be treated with psychotropic drugs will have to forgo any benefit from newer medication.

A third example of the tension between benefit to the individual and risks to the group comes from the emerging technology of xenotransplantation. This is the technology of animal-to-human transplants. Though tried sporadically since the 1960s, the use of animal organs to make up for the lack of human donor organs has never proven effective. The human body's rejection system rapidly recognizes that an animal organ, such as a pig liver, does not belong in a human body. The rejection of the foreign organ is immediate and complete.

New genetic technologies at least suggest a solution to these problems. Companies have created transgenic pigs that have two human genes. These are the precise genes that control the immediate rejection process. This means that morphologically compatible organs, such as those from pigs, might indeed be used as organs for human transplantation, at least until a human organ becomes available.

The problem is that organs from other species may carry new viruses or other diseases into the human population, diseases for which human beings have never developed any immunity. One such virus has been discovered in pigs, and others may be found. Here again is the tension between the individual and the group. No individual would accept a risky xenotransplant unless it was his or her last chance to prolong life. Persons high on the donor organ waiting would surely wait for a human organ. It is only the most desperate who would accept a transplant from transgenic pigs. For these persons the risk of a new infection is clearly outweighed by the certainty of death. For them the risk-to-reward ratio points in only one direction: Go for it. For society in general, however, the question is not nearly so easy. The general public is not terminally ill. For members of the public the risk of a new virus such as the notorious HIV is serious and likely outweighs the chance that they will need any transplanted organs in the future. For the sick individual a new technology carries one set of risk-to-reward ratios, whereas for a larger group the ratio reverses.

Can rules and policies be constructed that protect the group while providing opportunity for the desperate? At a minimum, perhaps, biological monitoring of patients and of those close to them should be required to uncover any new possible sources of disease. Should, therefore, the gravely ill be required to secure the consent of close family and friends to such monitoring before they can receive a transplant? What about possible rules for quarantine for those possibly exposed to an emergent new viral illness? These are some of the new bioethical questions that advances in genetics and transplant technology have raised.

A fourth area that displays the tension between benefits for the individual and risks to society concerns conflicts of interest within biomedical research. Research, to be valid, must remain rigorous and as far as possible objective. But care is not neutral or objective. Care focuses on one specific patient who needs help. Nowhere is the challenge of objectivity more serious than the evaluation of new drugs and other technologies that may enrich their inventors or discovers. Researchers studying the effect of a new drug may very well own stock in the company whose product they are evaluating. At the very least researchers hope to be funded again by their supporting companies. Can they really evaluate the results in a neutral way with such financial gains at stake? Can the heart surgeon who has perfected a new stent really be expected to ignore a potential windfall in evaluating this invention? But who else to go to for the best analysis of a new drug or technology? Not just any physician should be entrusted with such a serious evaluation. It seems obvious that the best specialists should perform the evaluation rather than just any individual with a medical degree. The specialists, however, are the very persons who will likely have the most to gain from positive evaluations. They are the ones whose knowledge of the field will allow them to invest wisely in just those companies whose cutting-edge technology they may very well be asked to evaluate. A positive evaluation may increase their wealth substantially. Even if they are not so invested, they certainly will want to continue doing substantial research for this company. If they offer too many negative evaluations, then they may not have their research funded in the future.

The problem of evaluating new biomedical technologies and their relationship both to individuals and to society is crucial as technology comes evermore to dominate the biological lives of humans. Specialists come to design, create, and evaluate the new technologies with less and less input from the public at large. This fact is not conspiratorial. It reflects the reality of increasingly specialized knowledge of technologies that influence human lives. The point made by Jacques Ellul in the 1950s, that humans live in a technological society from which they cannot easily abstract themselves, is nowhere better exemplified than in bioethics. Many people alive on the planet owe their lives to some biologically rooted technology, from vaccines to crops to gadgets. Without these technologies, many people would not be alive; with them humans exist as a result of technology, which transforms the biological face of the planet.

Bioethics and the Future

A second great area of bioethical inquiry concerns the use of technology to change the biological future of humanity. The first and most immediate question concerns human reproduction and the rising human population. The twentieth century witnessed a rapidly rising population not because the birthrate increased (in much of the world it actually declined) but because of increases in human longevity. The theoretical lifespan of a human being has not increased. Rather with technically improved sanitation, nutrition, and medical care, the average longevity of individuals has been dramatically increased. This increase has seriously outweighed any reduction in population from lower birthrates. The technology that has enabled this dramatic population increase has brought to the fore other questions about individual liberty to make reproductive choices and produced a rash of other technologies to control birthrates such as various forms of artificial contraception.

The development of technologies to control reproduction has produced rapidly declining birthrates in advanced countries such as Europe where declining births and aging populations has produced an "aging crisis" with too few workers to support the elderly and to supply workers for business. This sort of crisis would not be a problem if it were not for technology altering the rhythms of birth, life, disease, and death with which humans evolved for millennia.

A second form of technically driven effort to control and manipulate the human future comes in the form of attempts to screen out individuals with various forms of inborn, usually genetic, abnormalities. Of course, crude eugenics programs existed in the early part of the twentieth century whereby the "feebleminded" were permanently sterilized in an attempt to improve the biological future of humanity. Thirty thousand were sterilized in the United States. This process reached its horrible zenith in Nazi racial programs with their combination of ancient tribalism and modern technology.

More acceptable approaches to screening began in the early 1970s with the development of technologies enabling the screening of the unborn for abnormalities and of parents as carriers of genetic traits that when reproductively combined with a partner who had the same trait would produce a child with a genetic disease such as cystic fibrosis or sickle-cell anemia. These technologies provided parents ways to influence their own genetic offspring by selective abortion of any fetus that was abnormal. Over time, it could have substantial effects on the human future especially in technically advanced countries where pressures to have a "healthy child" are pronounced because it may be the only child that a specific couple has.

With the mapping of the human genome, scientists are increasingly able to pin down the specific genetic correlates of disease, from those cases in which a specific genetic abnormality causes a disease to cases in which genetics are only part of the cause of a human disease, or even to identify traits such as homosexuality. Because technology enables the identification of the genetic roots of many human traits, it increasingly empowers individuals to control their own fate and the fate of their progeny. If a woman knows, for example, that she has the BRCA1 breast cancer gene, and a first-degree relative actually has breast cancer, she then knows that she is very likely to get breast cancer. The data suggest that with these two factors, genetics and a case history, 85 percent of the time she will get breast cancer. With knowledge comes the opportunity for more rigorous screenings and the use of technology to avoid breast cancer. Knowledge of the gene changes her future and possibly that of her daughters.

Another example of how genetic knowledge changes the future is Huntington's Disease. This is a recessive genetic disorder that does not manifest itself until a person is in their late 30s After that the person progressively loses muscle control and eventually dies after a 5–7 year period. In the process they often need to be tied down to avoid hurting themselves with spastic movements. One can know even before birth whether one will have the disease or is a carrier. Knowledge of this fact surely will alter marriage, career, and family plans.

But the power of selection immediately raises the question of whether there is one "correct" sort of choice in various situations. Should some choices be encouraged, and others financially or otherwise discouraged? Should parents be encouraged to abort fetuses with some abnormality that will be costly to treat and denied insurance for future related treatments if they bear the child? In another actual example a young woman who had breast cancer in her family tree was considering the test for the breast cancer gene. Her insurer insisted that if they paid for the test they owned the results. If the results were positive, then it was highly likely that she would come down with breast cancer. The insurer made her an offer: They would pay for double radical mastectomy, or they would drop coverage for breast cancer from her policy. Knowledge changed a risk into a near certainty. It was no longer insurance against risk but a prepayment scheme for almost certainly needed services.

Genetic screening and testing thus raise direct and lively issues in the present. Issues that loom in the near future involve genetic engineering. Most authors reflect one of three possible responses: (1) passionate advocacy of human genetic engineering (Silver 1997, Stock 2002); (2) cautious acceptance (Buchanan et al. 2000); or (3) wary hostility (Kass 2002). Authors commonly begin arguing that the possibility of genetically designing human offspring is at hand. Actually, the capacity for genetic design is decades away if it is even possible. Many experts are increasingly doubtful that any rapid breakthroughs are likely. Despite several years of effort, cloning primates is turning out to be much more difficult than anticipated.

Supporters and critics of "redesigning humans" claim that whatever the current difficulties, it will eventually be possible to add or delete targeted genes. Combined with in vitro fertilization, this technology will allow people to choose the genetic destiny of their offspring. Because at some point in the future this scenario is likely to be possible, it should be the subject of discussion now. The technology would first be developed to treat genetic diseases such as Tay-Sachs or Huntington's chorea; no responsible parent could ever want such a disease to strike their descendants. But the technology that enables gene addition or deletion, that is, the "knockout" of something such as the specific gene for Huntington's or retinoblastoma, could just as easily be used to eliminate color blindness, male pattern baldness, or a tendency toward depression or addiction. But retinoblastoma, which leads to early blindness, seems clearly different than male pattern baldness, which is specifically genetic, or more loosely genetic dispositions to shyness or alcoholism. Both baldness and retinoblastoma are genetic but the argument for using knockout technology in the case of inherited blindness such as retinoblastoma seems much clearer than in baldness to which the term disorder or disease seems only loosely, if at all, to apply.

Some who have carefully studied these matters are moderate, voluntaristic optimists. They argue that, with care, patience, and thoughtfulness, humans can use technology wisely to eliminate Tay-Sachs or retinoblastoma from pedigree without committing to a complete redesign of human beings. Others such as Gregory Stock combine a sort of naive optimism with technological determinism. For them, the technology of redesign is fast approaching and will be used. So sign up to the inevitable future and go along for the ride.

The third group of writers, including conservatives such as Francis Fukuyama (2004) and Leon Kass (2002), or leftists such as Andrew Kimbrell (1998), seem like lonely fatalists who fear there is no realistic possibility of stopping the redesign of humanity. They seem fatalistic about the attempt and depressed at the prospect. Some have forsaken revealed religion as a means of guiding technology, so they cast their lot with human nature as a standard. Now, however, they seem to accept that Eden will be remade. Humankind's ability to do so, however, seems to undermine the very appeal to nature for guidance about the attempt. Hence, they are left rudderless in an ocean of uncertainty.

The same set of three views also appear in debates over human cloning. Passionate advocates such as Lee M. Silver (1997) and Stock (2002) see nothing wrong with the inevitable occasional practice of reproductive cloning. They think that in fact it will be used only occasionally, but are in principle not opposed to its widespread practice. Cautious acceptance is illustrated by Robert Wachbroit (1997), who argues that cloning can be used wisely and infrequently in cases of special need, for example, bone marrow for a child, without promoting widespread or general acceptance. Finally, Leon Kass (2002) and others, based on their conclusion that human cloning is an affront to human dignity, propose legal prohibitions on all such cloning, reproductive and therapeutic (arguing they cannot be separated and that the potential benefits of therapeutic cloning can be secured by other means).

Contemporary issues in bioethics thus pose a fundamental technological question with respect to the future: Does technology unleash the human passion for improvement in ways that reason cannot control? Is reason, as Thomas Hobbes (1588–1679) argued, a slave to the passions? If so, then technology, the supreme product of scientific reason, is only a tool to satisfy human desire for longevity, pleasure, and domination. Humans want a life of ease not disease. Technology thus aims to please by manipulating human biology to satisfy desires. Is this destiny or choice? If the former, then bioethical reflection is beside the point. If the latter, what choices should the collective bioethical wisdom of humankind encourage humans to make? Are humans now fated to a technological civilization from which they cannot escape as was argued by Martin Heidegger in his seminal essay "Question Concerning Technology" and by Ellul, Marcuse and others?

Bioethics and Globalization

A third area of bioethical inquiry especially related to science and technology concerns issues of globalization. Globalization is profoundly the result of technology. Technology has standardized production methods for low-skill workers in low-wage countries. It has increased information and travel networks to enhance information and capital flows across national and continental boundaries. Finally it has enhanced transportation of raw materials and finished goods from low-wage mines and factories to markets in the developed world. The first place where bioethics meets globalization is in the discussion of agricultural biotechnology and its impacts on peoples in developing countries.

But globalization and biology meet as well in the increasing flow of diseases around the world from those places where they have developed and coevolved with human and other species to new locations where they have created new problems for human life. The slave trade created an early instance of such problems. Sickle-cell anemia, which affects persons of African descent, carries no evolutionary advantage. Carrying the sickle-cell trait, which is recessive, does not produce the disease but nevertheless carries a resistance to virulent strains of malaria. In North America, which is malaria free, carrying the trait has no advantage, and a couple who both have the same recessive trait may conceive offspring with the disease. In sub-Saharan Africa, however, where as much as 40 percent of the population carries the trait, selective advantage is conferred. Thus moving the disease out of its evolutionary nest has raised issues for advanced countries, such as the need for screening programs for prospective parents of African descent, that would have not existed except for the global slave trade.

In another case, AIDS is a global pandemic that has grown rapidly with increased contact between human beings. HIV developed in Africa, but the effects have become global, and it has raised a number of serious new issues such as quarantine, the right to health care for those whose illness is the result of their own behavior, and a search for vaccines and specialized therapies that has consumed large amounts of research funds. Globalization has raised questions about competing needs to develop, for example, AIDS therapies versus an effective malaria vaccine—malaria being a disease that kills more persons who are much less responsible for their illness.

One final example is the appearance of West Nile virus in North America. As the name indicates, the historical location of this disease has been Africa and the Middle East. Borne by mosquitoes, it first appeared in the New York area in 1999. Over the next few years it spread virtually over the whole North American continent. It has become biologically fixed in this new location. It can be contained and treated, but will not be eradicated.

In a profound way, technology has become a part of the biological process of evolution. Technologies of globalization have spread disease from historic locations such as those of West Nile virus. Technology has become a sort of disease vector, a route by which new diseases travel to distant targets. If technology brings new populations into deep contact with what for them are new diseases, it also provides these same populations with means for evolutionary survival in the face of these and other diseases. Technology, for example, gives treatment for AIDS, means for tracking the spread of disease, and possibilities for other treatments. When technology is used to extend the power of humanity over a disease, the disease may become a serious one but one with which humanity can coevolve. Technology both causes the need for coevolution for North Americans with something such as West Nile virus and provides the means for such evolution, from spraying for mosquitoes to treatments, and if necessary to the development of vaccines. Technology thus becomes part of the Darwinian enterprise of evolutionary survival.

These problems have antecedents in the European colonization of the Americas where new diseases were brought by the settlers. But they now have more rapid global movement as a result of technology and technology can be aimed at providing cures or effective treatments of diseases of globalization.

Bioethical Justice

A final way in which global growth of technology both in medicine and transportation affects bioethics is by creating an emerging transnational trade in medical services. One example is the creation of a transnational market for so-called back-office operations. Billing has been outsourced to foreign low-wage countries for years. With information networks now available it is just as easy to bill insurers from Jamaica as it is from Kansas. The benefit is that Jamaicans or Indians will work for half or less of the U.S. minimum wage. But with increasingly sophisticated computer technology and education in less developed countries, even "back-office" physician or pharmacy services can be outsourced. Highly qualified radiologists in China could read standard X rays on their monitors for a third of the cost in the United States. Complicated readings might require a physician on the scene in the United States, but the yearly mammogram and similar procedures could be sent abroad. Billing is one thing, but how would patients personally discuss their test results with physicians halfway around the globe?

Pharmacy services will also increasingly be outsourced. With pharmaceutical prices in the United States still high and transportation increasingly efficient, it will become increasingly common for such drugs as Viagra to be made in China and shipped by anonymous clerks to U.S. addresses. The key issue here is the balance between price and safety. Can or should the government interfere to "protect" individuals from possibly unwise purchases of drugs from foreign sources that lack serious regulatory frameworks?

The transnational trade in medical services also includes highly technical services, which, being provided transnationally, are available only to those who can pay up-front. The best known and most troubling of these developments is the international trade in organ transplants, chiefly kidney or liver transplants. A person needs only one kidney to survive, and in some cases people have donated a kidney to save the life of a close relative. But enter a market made possible by technology: Highly qualified surgeons in India or China or elsewhere provide transplant services in fully staffed clinics primarily for other Asians with a desire for life and the wealth to pay. The surgeon and staff are well compensated. But in India, for example, the poorest of the poor are paid about $1,500 for a kidney. This amounts to a lifetime savings for the donor, but possibly no more than the cost of a plane ticket for the recipient. This raises enormous questions of justice and exploitation. Does money exploit the poorest of the poor who desperately need assistance? Does the whole practice raise questions of justice, where the rich can pay and the poor only suffer?

These questions also occur in increasing ways in the United States. At any one time hundreds of individuals in the United States are advertising a kidney for sale on the Internet. For the most part these are desperate lower or lower middle class people trying to avoid bankruptcy, home foreclosure, or property repossession. They see such a sale as one of the few ways to improve their fortune short of illegal activity or hitting the lotto. But does their very poverty make them subject to coercion and thus unable to give free and informed consent? In the United States researchers are forbidden from using prisoners for drug experiments because of the problems of coercion and lack of the ability to give informed consent. Would not the same argument apply to the desperate and the hopeless, who are ready to sell body parts via Internet technology? Technological power to commodify even the most personal of things, one's own body, creates bioethical issues that previous eras could avoid. Technological fatalism may overstate the case, but it does seem that the questions raised are inevitable.

Thus, technology may provide a means of evolutionary development in the face of changing biology. As such, technology develops around the fundamental biological and thus bioethical imperative of preserving human life. In the context of such a nexus between technology and Darwinism, bioethics provides both the comprehensive understanding of the problem and the subsidiary rules of honesty, disclosure, integrity, and justice that provide the moral ambit within which technology may be a morally acceptable vehicle for human well-being in a fundamentally Darwinian world.

What remains is the fundamental question of all technology. Can modern technology be contained within reason, or does the eternal passion for life and health overwhelm reason's capacity to moderate human desires within an ambit of moral principles and virtues?

RICHARD SHERLOCK

SEE ALSO Agriculural Ethics;Bioengineering Ethics;Bioethics Centers;Bioethics Committees and Commissions;Biotech Ethics;Environmental Ethics;Genethics;Medical Ethics;Neuroethics;Posthumanism.

BIBLIOGRAPHY

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Robertson, John A. (1994). Children of Choice. Princeton, NJ: Princeton University Press.

Silver, Lee M. (1997). Remaking Eden: Cloning and Beyond in a Brave New World. New York: Avon.

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Youngner, Stuart J.; Renée C. Fox; and Laurence J. O'Connell, eds. (1996). Organ Transplantation. Madison: University of Wisconsin Press.

INTERNET RESOURCE

Wachbroit, Robert. (1997). "Genetic Encores: The Ethics of Human Cloning." Report from the University of Maryland Institute for Philosophy and Public Policy, Volume 17, Number 4. Available from http://www.ifgene.org/wachbroit.htm.