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Bioethics

FOURTH EDITION Revised and Updated

Thomas A. Shannon and Nicholas J. Kockler

PART I: GENERAL ISSUES

1. Introduction: What Is Bioethics? ..............................................3

2. Technology, Nature, and Responsibility ................................13

3. Ethical Issues and Theories .....................................................28

4. Common Terms Used in Bioethics ........................................39

PART II: ISSUES EARLY IN LIFE

5. Abortion ...................................................................................67

6. Reproductive Technologies .....................................................89

7. Early Diagnosis of Genetic Anomalies ................................. 107

PART III: ISSUES AT THE END OF LIFE

8. Definitions of Death ............................................................. 129

9. Forgoing and Withdrawing Treatment ................................ 144

10. Euthanasia .............................................................................168

11. Physician-Assisted Suicide .................................................... 184

PART IV: ISSUES IN BIOTECHNOLOGY

12. Genetic Engineering: Nonhuman Organisms .....................201

13. Genetic Engineering: Human Beings ...................................231

14. Cell-Based Biotechnologies ..................................................250

PART V. OTHER SPECIFIC PROBLEMS

15. Organ and Tissue Transplantation ......................................273

16. Research on Human Subjects ...............................................290

17. A Whole Earth Ethic .............................................................302

WHAT IS BIOETHICS?

Today the word bioethics is commonplace. Several newsmagazines, television shows, and Web sites have devoted special editions to topics such as stem cell technology, cloning, organ transplantation, in vitro fertilization, and gene therapy. Almost daily, media attention focuses on some particular problem, application, or breakthrough in science that inevitably raises as many problems as it solves.

We have become so used to these discussions and events that we forget that it was only forty years ago that the institute of Society, Ethics and the Life Sciences-as the Hastings Center was known then- was founded.' In 1965, few knew of the institute, and fewer still understood what its members were talking about. But the role and value of this institute, and others that were to follow in its footsteps, were soon discovered as the major questions of abortion, population control, the allocation of resources, genetic engineering, behavior modification, and all the problems associated with dying began to press in upon us. Discoveries and applications began to outpace our ability to reflect on them, and everyone was reeling from the biological revolution.

We have seen several presidential commissions and advisory boards, an encyclopedia and its revised editions/ numerous journals3 and books,' several societies, associations, and centers,' and innumerable conferences all devoted to various problems in bioethics. Courses have spread throughout undergraduate and graduate schools; even graduate programs in bioethics now exist. Bioethicists have appeared as experts in court trials, and journalists frequently cite them in media reports about various dilemmas in health care and the life sciences. Institutional review boards, which examine the ethical dimensions of human research, are present almost everywhere.' Many hospitals now have in-house ethicists and/or ethics committees to help evaluate a variety of ethical dilemmas that occur in the routine provision of health care.'

Few would have thought that such events could have happened when the first few tentative steps in the ethical examination of issues in health care were being taken in the 1960s. From these early days, commentators generated a wealth of scholarship; and although many problems seem as intractable as they did when first considered, the field has advanced considerably, and we are the beneficiaries of such scholarship.

A number of names have come into use to describe different areas of study in this field. One is

medical ethics. This looks primarily to the study of ethics within the discipline of medicine and the medical profession. Another term is health care ethics, which examines all the various issues in health care, including medical and nursing ethics, as well as public policy and institutional issues. The term organizational ethics sometimes designates ethical discourse concerning institutional issues. When considering the ethics of caring for patients at the bedside, the terms clinical ethics or clinical bioethics are used. We will use the term bioethics, which is a more inclusive term.

Since bioethics examines the ethical issues at both the heart and the cutting edge of technology in health care and the life sciences, the area covered is necessarily broad. This is what makes bioethics as a field of study complex but also exciting. There is a need for many specialties and disciplines because no one field can claim the territory of life. In addition to the potential benefits and harms, we have learned that medical technologies have economic consequences, which raise questions of allocation. Reality-which is itself interdisciplinary-has taught us to be interdisciplinary in our thinking. Similarly, bioethics is teaching us the necessity of genuine interdisciplinary thinking and working. Traditional disciplines that participated in one way or another in the field of bioethics include, for example, theology, philosophy, medicine, law, and biology. One might say that bioethics is a multidisciplinary field carried out through interdisciplinary discourse.

BIOETHICS

When we focus on the first part of the word bioethics- are thrust into the exciting, complex, and often troublesome world of medicine and the life sciences, which includes neuroscience, genetics, and molecular biology. The prefix biocomes from the Greek word for life (bios). Several questions emerge when one thinks about applications of both biotechnology and nanotechnology. This aspect of our topic requires that we study these fields to understand the biological revolution that is occurring around us. While we need be neither experts nor even competent amateurs, we do need to be informed citizens if for no other reason than the developments in these fields have a profound impact on our lives and our society. Thus paying attention to developments in these fields is a critical first step in examining ethical dilemmas in bioethics.

BIOETHICS

The other part of the word-"ethics"-is equally important, for the developments we discuss raise serious and profound dilemmas that challenge our value system as well as the culture supporting those values. The root ethics comes from the Greek word ethike meaning the science of morals or the study of habits.

Ethics, of course, has a problematic reputation. Many regard ethics as the great naysayer and dismiss it out of hand. Others reduce ethical arguments to opinion or taste and refuse to face arguments and conflicts. Still others use carefully developed principles and/or methodologies to consider various values and to tease out hidden conflicts and complex relationships.

Let us present an overview of two methods of ethical decision making that are frequently used in bioethics. The first is a kind of ethics known as deontological ethics. The Greek word deon means duty, obligation, or principle. Deontological ethics is a method of decision making that begins by asking, "What are my duties?" or "What are my obligations?" The correct ethical course is to follow

one's duties-regardless of where they lead one. One may refer to this as the "Damn the torpedoes, full steam ahead" school of ethics. For once duties or obligations are established, the appropriate actions are clear and must be undertaken regardless of circumstances or outcomes.

A very common example of deontological ethics is the Ten Commandments of the Judeo-Christian religious tradition. The Ten Commandments are basically a set of moral duties that tell what to do or not to do. Biblical writers present them as clear and certain moral guides that mean what they say and say what they mean. They are, after all, the Ten Commandments, not the Ten Suggestions.

The second is a kind of ethics known as teleological ethics. The Greek word telos means end or goal. Thus, in teleological ethics, one's moral obligations are established, not by an evaluation of obligations, but by an examination of consequences or outcomes of various actions. Thus one name for this kind of ethical theory is consequentialism. This method attempts to predict what will happen if one acts in various ways and to compare these various outcomes against one another. This outcomes-based evaluative process determines what is moral or the right act.

Situation ethics is probably one of the better known of the many variants of consequentialism. Popularized in the mid1960s by Joseph Fletcher, situation ethics requires that we attend seriously to the implications of actualizing our ethical beliefs. Thus situation ethics would argue that it is not enough to do good; one must also know which of the many possible goods is better. Therefore, the basis for right action is found in the particular characteristics of the situation.

Although each of these has the strengths of the ideas on which the methods are based, they both suffer from a limitation: they each have tunnel vision when evaluating means or ends. Deontological ethics typically neglects the outcome of an act and is inattentive to substantive differences in the outcome of our actions or the way an unnuanced act can affect individuals or society. Additionally, deontological ethics typically does not take into account the situation or circumstances in which individuals find themselves. Similarly, in its zeal to attend to the outcomes of our actions, consequentialism neglects to develop a way to evaluate the various outcomes or to compare them against one another. That is, situation ethics says to do that act which produces the best or better outcome. But it has no built-in standard by which to judge or to discriminate between outcomes. Perhaps a viable ethical strategy would be to use the two theories as a dialectical way of evaluating both means and ends. In this way, the theories can be mutually corrective rather than mutually exclusive by being attentive both to our obligations and to various outcomes.

We will explore ethical theories in more detail in chapter 3.

THE ISSUES

One can find the topics we will discuss in this book in the table of contents. As an introduction, the book will present an overview of the issues in the major problem areas of bioethics: abortion, reproductive technology, early (genetic) diagnoses, death and dying, forgoing or withdrawing treatment, euthanasia, physician-assisted suicide, genetic engineering-of plants, animals, and human beings-cell-based biotechnologies (e.g., stem cell technology, cloning, and chimera research), organ transplantation, research on human subjects, and environmental issues.

As you proceed into the book, you will notice that certain questions continue to reappear, certain terms continue to make their significance felt. Certain questions and solutions to problems will raise broader social policy questions. Specific practices call into question fundamental relationships and values. This introduction to bioethics will not examine all these topics or subjects but will frame various questions so that you will have a way of orienting yourself to these broader questions of social policy. For an in-depth examination of these and other topics, we suggest books at the end of each chapter that are relevant for that particular topic.

You will also find any number of Web sites on the Internet relating to bioethics. In November 2007, we ran a Google Web search on "bioethics," which returned about 4,610,000 hits. Of course, not all of these hits may be trustworthy, good, or reliable. There are several research tools available on the Internet and through libraries. The National Reference Center for Bioethics Literature (NRCBL) at Georgetown University offers a bibliographic search service. Users submit information about the particular topic and project on which they are working, and the NRCBL will return a bibliography of bioethics resources (articles, books, etc.) fulfilling the search criteria. The Web portal for this service is: http://bioethics.georgetown.edu. As the Internet evolves, scholars, students, and others in the field of bioethics will begin to appreciate and distinguish the good resources on the Web from the problematic ones.

To return to our first question-What is bioethics?-let us consider a few definitions. One may define bioethics generally as follows: the systematic exercise, study, and methodology of responsible agents and actions in the life sciences (e.g., biology) and healing arts (e.g., medicine). The Oxford English Dictionary defines bioethics as, "The discipline dealing with ethical questions that arise as a result of advances in medicine and biology."' A biologist by the name of Van Rensselaer Potter first used the term to refer "to a new field devoted to human survival and an improved quality of life, not necessarily or particularly medical in character."' In 1977, the philosopher Samuel Gorovitz defined bioethics as the "critical examination of the moral dimensions of decision-making in health-related contexts and in contexts involving the biological sciences."" This definition is still a good one for it highlights the interdisciplinary and social dimensions of bioethics. It points us in the right direction as we enter the fascinating, but complex world of bioethics.

DISCUSSION QUESTIONS

1. Why is it necessary to have basic knowledge of both scientific and ethical issues in considering the problems encountered in bioethics?

2. What major bioethical problems have been in the media recently? What are some of their implications?

3. Why must one also consider the social or policy implications of problems in bioethics?

NOTES

1. Albert R. Jonsen, The Birth of Bioethics (New York: Oxford University Press, 1998), 20-22.

2. The Encyclopedia of Bioethics is in its third edition. See Stephen G. Post, ed., Encyclopedia of

Bioethics, vols. 1-5, 3rd ed. (New York: Macmillan Reference USA, 2004).

3. Several key bioethics journals include, but are not limited to, the American Journal of Bioethics, Journal of Clinical Ethics, Hastings Center Report, Bioethics, the Kennedy Institute of Ethics journal, and the National Catholic Bioethics Quarterly.

4. See Jonsen, Birth of Bioethics, and Jennifer K. Walter and Eran P. Klein, eds., The Story of Bioethics: From Seminal Works to Contemporary Explorations (Washington, DC: Georgetown University Press, 2003).

5. For example, the American Society for Bioethics and Humanities, the American Society of Law, Medicine, and Ethics, the Kennedy Institute of Ethics, and the Hastings Center.

6. See the compliance rules of the Department of Health and Human Services, Protection of Human Subjects, 45 CFR 46 (2005), §46.112.

7. See JACHO standards for accreditation: Joint Commission on Accreditation of Healthcare Organizations, Comprehensive Accreditation Manual for Hospitals (Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organizations, 1999).

8. Though many dispute whether bioethics should be understood as a discipline in the narrow sense. See Jonsen, Birth of Bioethics, 325-51. See also Daniel Callahan, "Bioethics," in Encyclopedia of Bioethics, 1:278-87; and idem, "Bioethics as a Discipline," The Hastings Center Studies 1, no. 1 (1973): 66-73.

9. Callahan, "Bioethics," 280. See also Warren T. Reich, "How Bioethics Got Its Name," Hastings Center Report 23, no. 6 (November 1993): S6.

10. Samuel Gorovitz, "Bioethics and Social Responsibility," The Monist 60 (January 1977): 3.

BIBLIOGRAPHY

Ashley, Benedict M., Kevin O'Rourke, and Jean K. deBlois. Health Care Ethics: A Catholic Theological Analysis. 5th ed. Washington, DC: Georgetown University Press, 2006.

Beauchamp, Tom L., and James E Childress. Principles of Biomedical Ethics. 5th ed. New York: Oxford University Press, 2001.

Beauchamp, Tom L., LeRoy Walters, Jeffrey P. Kahn, and Anna C. Mastroianni, eds. Contemporary Issues in Bioethics. 7th ed. Belmont, CA: Wadsworth, 2007.

Cahill, Lisa Sowle. Theological Bioethics: Participation, Justice, and Change. Washington, DC: Georgetown University Press, 2005.

Crigger, Bette-Jane, ed. Cases in Bioethics: Selections from the Hastings Center Report. 3rd ed. New York: St. Martin's Press, 1998.

Department of Health and Human Services. Protection of Human Subjects. 45 CFR 46. 2005. §46.112.

Fletcher, Joseph. Morals and Medicine. Princeton, NJ: Beacon Press, 2000.

. Humanhood: Essays in Biomedical Ethics. Buffalo, NY: Prometheus Books, 1979.

Fletcher, Joseph F., and James F. Childress. Situation Ethics: The New Morality. Louisville, KY: Westminster John Knox Press, 1997.

Gorovitz, Samuel, et al., eds. Moral Problems in Medicine. 2nd ed. Englewood Cliffs, NJ: Prentice- Hall, 1983.

Harron, Frank, John Burnside, and Tom Beauchamp. Health and Human Values: A Guide to Making Your Own Decisions. New Haven, CT: Yale University Press, 1983.

Joint Commission on Accreditation of Healthcare Organizations. Comprehensive Accreditation Manual for Hospitals. Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organizations, 1999.

Jokobovits, Immanuel. Jewish Medical Ethics: A Comparative and Historical Study of the Jewish Religious Attitude of Medicine and Practice. New York: Bloch Publishing Company, 1997.

Jonsen, Albert R. The Birth of Bioethics. New York: Oxford University Press, 2003.

Jonsen, Albert R., Mark Siegler, and William J. Winslade. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. 6th ed. New York: McGraw-Hill, 2006.

Jonsen, Albert R., Robert M. Veatch, and LeRoy Walters, eds. Sourcebook in Bioethics. Washington, DC: Georgetown University Press, 1998.

Kelly, David F. Contemporary Catholic Health Care Ethics. Washington, DC: Georgetown University Press, 2004.

Critical Care Ethics: Treatment Decisions in American Hospitals. Eugene, OR: Wipf and Stock, 2002.

The Emergence of Roman Catholic Medical Ethics in North America: An Historical-Methodological- Bibliographical Study. 2nd ed. New York: Edwin Mellen Press, 1979.

Kelly, Gerard. Medico-Moral Problems. St. Louis, MO: Catholic Hospital Association, 1958.

Kuczewski, Mark G., and Rosa Lynn B. Pinkus. An Ethics Casebook for Hospitals: Practical Approaches to Everyday Cases. Washington, DC: Georgetown University Press, 1999.

Levine, Carol, ed. Taking Sides: Clashing Views on Controversial Bioethical Issues. 12th ed. Guilford, Ontario: McGraw-Hill, 2007.

Mackler, Aaron. An Introduction to Catholic and Jewish Bioethics: A Comparative Analysis. Washington, DC: Georgetown University Press, 2003.

ed. Life and Death Responsibilities in Jewish Biomedical Ethics. New York: Louis Finkelstein Institute, 2000.

May, William E The Physician's Covenant: Image of the Healer in Medical Ethics. 2nd ed. Louisville, KY: Westminster John Knox Press, 2007.

McCormick, Richard. How Brave a New World?: Dilemmas in Bioethics. Washington, DC: Georgetown University Press, 1981.

Menikoff, Jerry. Law and Bioethics: An Introduction. Washington, DC: Georgetown University Press, 2001.

Panicola, Michael R., John Paul Slosar, Mark E Repenshek, and David M. Belde. An Introduction to Health Care Ethics: Theological Foundations, Contemporary Issues, and Controversial Cases. Winona, MN: St. Mary's Press, 2007.

Pence, Gregory E. Classic Cases in Medical Ethics: Accounts of the Cases That Shaped and Define Medical Ethics. 5th ed. New York: McGraw-Hill, 2007.

Classic Works in Medical Ethics: Core Philosophical Readings. Boston: McGraw-Hill, 1997.

Ramsey, Paul. The Patient as a Person: Explorations in Medical Ethics. 2nd ed. New Haven, CT: Yale University Press, 2002.

Ethics at the Edges of Life: Medical and Legal Intersections. New Haven, CT: Yale University Press, 1978.

Reich, Warren, ed. The Encyclopedia of Bioethics. 2nd ed. New York: Macmillan, 1995.

Shannon, Thomas A., ed. Bioethics: Basic Writings on the Key Ethical Questions That Surround the Major, Modern Biological Possibilities and Problems. 4th ed. Mahwah, NJ: Paulist Press, 1993.

Shannon, Thomas A., and Joann Manfra, eds. Law and Bioethics: Texts with Commentary on Major Court Decisions. New York: Paulist Press, 1982.

Starr, Paul. The Social Transformation of American Medicine: The Rise of a Sovereign Profession and the Making of a Vast Industry. New York: Basic Books, 1982.

Veatch, Robert M. Case Studies in Medical Ethics. Cambridge, MA: Harvard University Press, 1977.

Verhey, Allen, and Stephen Lammers, eds. On Moral Medicine: Theological Perspectives in Medical Ethics. 2nd ed. Grand Rapids, MI: William B. Eerdmans, 1998.

Walter, James J., and Thomas A. Shannon. Contemporary Issues in Bioethics: A Catholic

Perspective. Lanham, MD: Rowman & Littlefield, 2005.

Walter, Jennifer, and Eran Klein, eds. The Story of Bioethics: From Seminal Works to Contemporary Explorations. Washington, DC: Georgetown University Press, 2003.

INTRODUCTION

Humans have always seemed to find ways of intervening in nature. The ability to make a fire and the invention of the wheel had profound impacts on the development of human society. The domestication of plants and animals allowed humans to live in ways unthought of before. The rise of modern science and the Industrial Revolution stand as markers of yet another major change in our way of life.

Our current technological revolution presents further opportunities for intervening in life on both the micro and macro levels. The technologies surrounding conception and birth, such as in vitro fertilization and amniocentesis, help determine when we will be born and what some of our qualities may (or may not) be. Developments in genetics led to the production of new grains that produce more bushels per acre.' An oil-eating bacterium has been manufactured to help clean up oil spills.' Although a totally implantable artificial heart is not yet a reality, various assist devices are available to serve as a transition to technology; in fact, some researchers are developing technology that makes threedimensional tissues using inkjet technology.' In terms of regenerative medicine, the hope for these scientists is to one day use the technology to create fully functional replacement organs or tissues. The sequencing of the human genome by the Human Genome Project and Celera Genomics has given us the map and sequence of our genetic structure. Current research is aimed at deciphering the functions of our genes for new approaches to treating genetic diseases and preventing others.

Technology touches virtually every part of our lives; but the moral record of technology is certainly a mixed one. Clearly technology has brought benefits. Computers have given us incredible capacities for calculating and information processing. The vast amounts of information about individuals collected and stored through technology raise serious issues of privacy and confidentiality. Medical technologies provide improved diagnostic capacities, but frequently we can do little or nothing about the disease diagnosed. Other technologies have fairly negative consequences. Nuclear weapons brought us to the brink of annihilation. To protect national interests, governments continue to develop more sophisticated instruments of "interrogation." The impact of yet other technologies is mixed. Nuclear power stations provide necessary energy but problems of waste disposal have yet to be fully resolved. Birth technologies provide children but do not cure infertility. In addition, many wonder whether such technologies reduce children to commodities. Developments in biotechnology promise new cures or the end of global hunger, yet they carry threats to social justice, biodiversity, and ecological harmony.

Whatever one's judgment about a particular technology, technology is here to stay and will continue to have far-reaching effects on our lives.

CHARACTERISTICS OF TECHNOLOGY

While specific technologies vary, technology itself has several common themes. Let us indicate some of these by following ideas proposed by Norman Faramelli in his book Technethics.4 Here, we will introduce six characteristic themes of technology.

The Empirical or Pragmatic Spirit

This is certainly close to the American spirit. We want to get the job done and get it done quickly. The issue is results, preferably results that we can measure.

Functionalism

Functionalism follows from the pragmatic bent of our culture. The issue is design and performance. We are frequently more concerned about how something will work than why we should do it.

Preoccupation with Means, Not Ends

We know that it is often easier to figure out how to solve a particular problem than to agree on which problem ought to be solved. The question of ends requires explicit value judgments for solutions. We often hope that we can finesse that difficult debate by focusing on the means-and by pretending that the means debate involves no value or ethical judgments.

Preference for Quantity over Quality

An old song says that if you can't be with the one you love, then love the one you're with. This attitude reflects-among other things-a preference for that which is at hand, for what is available, rather than that which is better. Of course, quantitative measurements are easier to do and the phrase the bottom line has a nice objective, realistic ring to it. Yet for all the material goods available to us, we seem too unsatisfied, unfulfilled. Plus, knowledge of the bottom line may not give us the important information we want and need for critical decision making.

Efficiency and Profit

The concept of standardization led to the development of interchangeable parts, which led to mass production, which led to fewer skilled laborers being needed, which led to lower wages, which led to higher profits. Now robots, which are directed by computers, perform much of this process-hence, the emergence of automation in manufacturing. Pragmatism, functionalism, and preoccupation with means and quantity all join here to promote efficiency in the service of higher profits.

Manipulation

Concern for efficiency and quantity leads to a desire to exercise greater rational control over all phases of life. For only in this way can one increase productivity at a cost-effective level.

Manipulation to achieve rational control is one thread in the manufacturing process-though the final word on the use of robots is yet to be heard. But such manipulation may be quite another thing if we begin more intensive selection of characteristics of our offspring through advanced diagnostic technologies and genetic interventions.

WHAT IS TECHNOLOGY?

Having seen some of the characteristics of technology, let's now look to defining it. An obvious approach to technology is through hardware-the machines, the instruments, the robots. This is certainly an important part of technology, for this dimension of it clearly has a major impact on our lives.

Others, however, like French theologian Jacques Ellul see technology more as technique.' Technique is a complex of standardized means for achieving a predetermined result. Someone using technology obtains results through a deliberate and rationalized process, using many of the characteristics of technology described above. Technique is the rational organization of behavior, not hardware or output; in other words, technique is like software.

This orientation is more helpful because it allows us to see technology as a cultural phenomenon, a method of organization, an angle of vision. While the products of the technological revolution impact our lives, technology as an organizational method for both thought and social interaction profoundly affects our social reality.

Daniel Bell has also analyzed technology and has defined five essential dimensions: function, energy, fabrication, communication and control, and regulated decision making.'

Function

Function is the primary element in design and relates to nature only insofar as nature is an efficient guide. As noted before, the issue is what something does and how something performs, not why we should do this.

Energy

The technological revolution gradually demanded new power sources, and we fulfilled that need by shifting from natural sources such as wind, water, and personal strength to manufactured sources such as steam and electricity. Now that we are depleting the natural resources required for their generation, we are turning to nuclear power. Our need for power is outstripping both our resources and our capacity to generate it, and this is creating a crisis, nationally and internationally.

Fabrication

Bell uses this word to describe the process of standardization of both parts and actions. This permits the replacement of one part or person with another so that one can achieve greater efficiency. One can use this process in manufacturing, in organizing a corporation, or in education.

Communication and Control

Technological systems feed off information and require increasing amounts of it to keep the system going. Thus, whoever controls the communication system controls the power. Information is useless unless someone communicates it, and technology, through increasing utilization of computer networks, provides an increasingly effective and efficient method of communication and control. Of course, this has vast implications for social power because not everyone will have access to these technologies or know how to use them.

Decision-Making Rules

Since function, fabrication, and communication are critical parts of the technological culture, we need to be assured that there will be coherence in their use and application. Rules of communication and decision making cannot be random or spontaneous, or the vital flow of information may be interrupted. Thus there is a need for speed and accuracy in the decision-making process, which calls for greater standardization, which leads to further decisions about what one will or will not include in decision making. This, of course, leads to a greater centralization of power and reinforces communication and control systems.

Whether understood as hardware or software, technology has profound effects on our everyday lives. Because of this, people see the need to examine technology to predict its effects and to evaluate them. Such assessments will, we hope, help us avoid many undesirable aspects or consequences of a particular technology.

One such method of evaluation is called technological assessment. This is a systematic study of the effects on society that may occur when a technology is introduced, expanded, or modified, with special emphasis on the impacts that are unintended, indirect, and delayed. This method attempts to evaluate a broad range of effects, including-but not limited to- environmental, social, economic, and political dimensions. Thus, a technological assessment seeks to examine as thoroughly as possible the short- and long-term consequences of a technology, its risks and benefits, its social and environmental impacts, and the cultural implications. Only by attending to all of these dimensions can one obtain a full sense of the significance of a technology.

Henk ten Have, a professor of medical ethics in the Netherlands, has argued that we must also recognize that technologies may "recast the initial problem into a new phraseology that may create new concepts; they also relocate problems and may shift responsibility for finding acceptable solutions."' From this perspective an assessment of technology should not only examine the implications of introducing a new technology as noted above, but also examine the impact of technical rationality on ourselves, our personal and professional relations, and our society. This technical rationality has led to a preference for compartmentalization, a diminishment or even distrust of subjectivity, and a preference for instruments and objectivity. This orientation to technological assessment follows from understanding technology as a way of thinking. The important part of a technology assessment, then, is to think of how the introduction of a technology helps us reconceptualize or reimagine who we are as well as our relation to society.

TYPES OF TECHNOLOGY

In his study of technology, Daniel Callahan identified five types of technology." The purpose of developing this classification schema was to help us see the potential of various technologies as well as understand the impact various technologies have on our lives. They are preservation technologies, improvement technologies, implementation technologies, destructive technologies, and compensatory technologies.

Preservation Technologies

These technologies help us adapt to nature or to survive various environments so we can fit into our environment, or help us investigate our environment. Some examples of these technologies are our homes, furnaces, irrigation systems, eyeglasses, and telescopes.

Improvement Technologies

Technologies such as these enable people to meet their felt needs or to go beyond the limits of their particular natural capabilities. As such, improvement technologies can enhance our physical dimensions or can help decorate or embellish our bodies. Examples of these are genetic engineering, prosthetics, and cosmetic surgery.

Implementation Technologies

These technologies are difficult to describe because their purpose is to assist in the implementation of other technologies. One can best think of these technologies as facilitators or enhancers. Thus, the computer allows us access to other information technologies, and the telephone allows us access to information. Planned obsolescence or the changing fashion allows people to have work.

Destructive Technologies

Technologies such as these are designed with one primary purpose: destruction. They may help us achieve other ends, but the purpose of these technologies is clear from their design. Such technologies may achieve their end through manipulation and control or simply by the capacity for obliteration. Examples are behavior modification technologies, weapon systems, and vacuum aspirators.

Compensatory Technologies

Having developed and implemented all manner of technologies, we now need other technologies to help us deal with the effects of these technologies on our lives. Thus, we have machines to help us exercise, we have noise-canceling headphones to help drown the sounds of other technologies, and we have sensitivity training to enable us to experience the world of nature that we have removed through technology.

UNDERSTANDINGS OF NATURE

Individuals or groups always use or apply technologies within a context. One critical context affected by our view of technology is that of nature. Here, we present three views of nature, developed by Daniel Callahan, to help understand both the arena in which technologies are often applied and some of the presuppositions we bring to them.

Nature as Plastic

In this perspective, one sees nature as alien and removed from human beings. It is outside of us and we are separate from it. It is plastic in that humans can shape and use it in any way human beings see fit. The model assumes that the only limit to nature is the limit human beings put on it. Thus, nature is totally at the disposal of human beings.

Nature as Sacred

This tradition finds a home in both Eastern and Western religious traditions. Taoism suggests conformity to nature so that an individual may become part of the cosmic whole of which nature is a manifestation. The medieval theologian Bonaventure, following the lead of Francis of Assisi, saw nature as the footprints of God. The natural was a reflection of the glory of God. These perspectives create an attitude of stewardship or conservation of nature. While one may intervene, such acts should be discrete, infrequent, and reverent.

Nature as Teleological

This understanding of nature suggests that there is a purpose and logic in nature. There is an inner dynamism that leads nature to certain ends. There is a limit that prevents the violation of nature. Thus, the extent of interventions into nature is set by the dynamism of nature itself.

What we think we can do determines, in part, what we do. If, for example, we think that nature is only an object existing apart from us, we may be willing to consider more interventions than if we thought of it as being part of an organic whole that is sensitive to interventions.

Ironically, the Judeo-Christian tradition is partly responsible for the desacralization of nature. In its clear and firm rejection of idolatry and its affirmation of God's being a God of nature rather than a God in nature, that tradition helped validate the objectification of nature. While many in that tradition would not want to intervene to the same extent that others have, nonetheless the balance is a difficult one to maintain.

RESPONSIBILITIES OF SCIENTISTS

In addition to thinking about the various meanings of technology and nature, we also need to think of the responsibilities of the scientists, for these are the individuals most directly involved in interventions into nature. James Gustafson proposed four models we can use to think about professional responsibility in this area and to evaluate the consequences of a particular position.'

Total Intervention

In this position, scientists would have the right to do whatever is possible; some call this the technological imperative. The justification for this position is the inherent value of knowledge itself. This is complemented by the valuing of intellectual curiosity and the seemingly inherent human drive to solve problems. In this model the only limit is the lack of technical capacity.

No Intervention

This blanket prohibition is based on either a view of nature as sacred and therefore inviolable or a conviction that the proposed research violates a limit imposed by nature. This model is reminiscent of the position of some Native Americans who refused to practice agriculture because to do so was to rip up the breast of their mother, the earth. Total consistency in this position would lead to the reduction of the human community to huntingand-gathering societies. Thus, many individuals would not use this principle absolutely but would rather understand it as a strong check on the previous understanding of intervention.

Limited Interventions

This perspective argues that scientists have no right to change the most distinctive human characteristics. This model, related to an understanding of nature as teleological, sees interventions checked by a particular limit: human nature. Thus, one can intervene in nature (as opposed to the second model) but human nature is the boundary, not lack of technical capacity (as in the first model).

Directed Interventions

This model says that scientists have the right to foster the growth of valued human characteristics and to remove those that are harmful. This model suggests a high level of intervention both to control and to direct human development. The goal is quality of life, and it is served by directing human growth and removing obstacles to its fulfillment.

Clearly, nobody practices these models in a pure form, but we do find traces of them in most of us. The issue is to use these perspectives to understand better why we are intervening in nature and to ask if there are any restraints on this. In other words, one can use these models as a way to evaluate a scientist's responsibility in the development and use of technology.

SOCIETY, SCIENCE, AND TECHNOLOGY

For those who are not bench scientists, a helpful way to think about being responsible with technology is to consider the relationships between society, science, and technology. Ian Barbour illustrates three ways to understand technology: technology as threat, technology as liberator, and technology as an instrument of power.'° Barbour argues that technology should be seen as an instrument of power, formed by dynamic interactions between society, science, and technology itself. Because institutions yield these instruments and exercise their powers, technology serves institutional interests, which include human values (e.g., goods necessary for human beings to flourish), expansion of human knowledge (a value itself), profit, and so on. These interests interact and help shape the research, development, marketing, and use of technology across a wide array of human situations. It is within these situations that individuals and groups face the profound bioethical questions in the responsible use of these technologies.

SUMMARY

If we look around us, it is clear that technology is here to stay. Our culture is utterly dependent on

various aspects of it. We could not get through our day without technology. From clocks to microwaves to transportation systems to digital video recorders and high-definition TV, our lives, work, and entertainment are inherently tied up with technology.

Our quality of life has greatly increased because of technology. We live in greater comfort in various climates. We have abundant food and water supplies, we can communicate and travel much more efficiently, and our health has improved.

After two world wars and attacks such as the one on September 11, 2001, we have become acutely aware of how some can use technology to cause terror and suffering throughout the world. We stand in daily dread of the release of weapons that could destroy us-whether they are designed for destruction (e.g., nuclear weapons) or not (e.g., commercial aircraft). We have more information accessible to us but we know less of what it means or what to do with it. Pollution, a byproduct of our technical culture, is threatening to destroy our ecosystem. Many resources needed for daily living are in short supply or in danger of being depleted.

Thus many benefits and problems are given to us by technology. Each requires much study and examination. But it is to one

DISCUSSION QUESTIONS

1. What are the costs and benefits, the strengths and weaknesses, of the vast technological society that has developed in America?

2. What are some examples of unintended and delayed side effects of technology? Do you think these could have been avoided?

3. Develop lists of examples of the various types of technologies. What needs are these technologies meant to satisfy? What values are these technologies based on?

4. How has technology benefited your life? How has it complicated your life?

5. Which is more helpful for you: to think of technology as hardware or as a system? Why?

NOTES

1. David Zilberman, Holly Ameden, and Matin Qaim, "The Impact of Agricultural Biotechnology on Yields, Risks, and Biodiversity in Low-Income Countries," Journal of Developmental Studies 43 (2007): 63-78.

2. Victor de Lorenzo, "Blueprint of an Oil-Eating Bacterium," Nature Biotechnology 24 (2006): 952-53.

3. Tao Xu, Joyce Jin, Cassie Gregory, James J. Hickman, and Thomas Boland, "Inkjet Printing of Viable Mammalian Cells," Biomaterials 26 (2005): 93-99.

4. Norman J. Faramelli, Technethics (New York: Friendship Press, 1971), 31 ff.

5. Jacques Ellul, The Technological Society (New York: Vintage Books, 1964), 13ff.

6. Daniel Bell, faculty seminar presentation (Worchester Polytechnic Institute, 1976); see also idem, The Coming of the PostIndustrial Society: A Venture in Social Forecasting (New York: Basic Books, 1973).

7. Henk A. M. J. ten Have, "Medical Technology Assessment and Ethics: Ambivalent Relations," Hastings Center Report 25 (September-October 1995): 18.

8. Daniel Callahan, The Tyranny of Survival (New York: Macmillan, 1973), 55ff.

9. James Gustafson, "Basic Issues in the Biomedical Fields," Soundings 53 (Summer 1970): 151ff.

10. Ian G. Barbour, Ethics in an Age of Technology: The Gifford Lectures 1989-1991, vol. 2 (New York: HarperCollins Publishers, 1993), 3-25.

BIBLIOGRAPHY

Barbour, Ian. Ethics in an Age of Technology: The Gifford Lectures 1989-1991. Volume 2. New York: HarperCollins Publishers, 1993.

ed. Science and Religion. San Francisco: Harper and Row, 1968.

Bell, Daniel. The Coming of the Post-Industrial Society: A Venture in Social Forecasting. New York: Basic Books, 1973.

Bronowsky, Joseph. Science and Human Values. San Francisco: Harper and Row, 1965.

Bross, I. D. J. "Metatechnology: A Technology for the Safe, Effective, and Economical Use of Technology." Theoretical Medicine 2 (1981): 145-53.

Callahan, Daniel. The Tyranny of Survival. New York: Macmillan, 1973.

de Lorenzo, Victor. "Blueprint of an Oil-Eating Bacterium." Nature Biotechnology 24 (2006): 952- 53.

Diamond, Jared. Guns, Germs, and Steel. New York: W. W. Norton & Co., 2005.

Ehrlich, Paul R. Human Natures. Washington, DC: Island Press, 2000.

Ellul, Jacques. The Technological Society. New York: Vintage Books, 1964.

Faramelli, Norman J. Technethics. New York: Friendship Press, 1971.

Ferkiss, Victor C. The Future of Technological Civilization: The Myth and the Reality. New York: George Braziller, 1969.

Gustafson, James. "Basic Issues in the Biomedical Fields." Soundings 53 (Summer 1970): 151-80.

Hardin, Garrett. Exploring New Ethics for Survival: The Voyage of Spaceship Beagle. New York: Viking Press, 1972.

Haring, Bernhard. Ethics of Manipulation: Issues in Medicine, Behavior Control, and Genetics. New York: Seabury Press, 1975.

Have, Henk A. M. J. ten. "Medical Technology Assessment and Ethics: Ambivalent Relations." The Hastings Center Report 25 (September-October 1995): 13-19.

Kuhn, Thomas. The Structure of Scientific Revolutions. Chicago: University of Chicago Press, 1970.

Lappe, Marc. Genetic Politics: The Limits of Biological Control. New York: Simon and Schuster, 1977.

Lock, Margaret, and Deborah Gordon. Biomedicine Reconsidered. Dordrecht: Kluwer, 1988.

MacKay, Donald. Human Science and Human Dignity. Downers Grove, IL: Intervarsity Press, 1979.

Shinn, Roger. Forced Options: Social Decisions for the 21st Century. San Francisco: Harper and Row, 1982.

Shinn, Roger, and Paul Abrecht, eds. Faith and Science in an Unjust World: Report of the World Council of Churches' Conference on Faith, Science, and the Future. 2 vols. Geneva: World Council of Churches, 1981.

Xu, Tao, Joyce Jin, Cassie Gregory, James J. Hickman, and Thomas Boland. "Inkjet Printing of Viable Mammalian Cells." Biomaterials 26 (2005): 93-99.

Zilberman, David, Holly Ameden, and Matin Qaim. "The Impact of Agricultural Biotechnology on Yields, Risks, and Biodiversity in Low-Income Countries." Journal of Developmental Studies 43 (2007): 63-78.

INTRODUCTION

In the last chapter, we saw the importance of responsibility in the research, development, and use of technology, including biomedical technology. In this chapter, we will explore ways we can judge which uses of technology, or our moral choices, are the most responsible. This examination of the criteria upon which one bases such decisions is called ethical analysis. Our principal goal is to prepare you for some of the discussions that will emerge in the various topics we will cover and to suggest basic frameworks for ethical analysis.

ETHICAL ISSUES

What are ethical issues? One can think of ethical issues as the variables one considers in making a judgment or decision about which option is the best or more morally viable. Ethical issues can constitute a range of areas in the moral life-from the macro-level issues in public policy to the micro- level issues of end-of-life treatment decisions at a patient's bedside. We cannot, however, address ethical issues in a vacuum; we need an overarching framework or structure to analyze them properly. Thus, to answer the question, How do we make ethical judgments or responsible decisions? we apply ethical theories, which are informed by the various ethical issues at stake.

ETHICAL THEORIES

In general, an ethical theory is the process by which we justify a particular decision or answer a specific normative question; a theory provides an overarching framework in which one addresses and evaluates ethical issues. Ethical theories organize complex information and competing values and interests, and help us formulate answers to questions such as What should I do? What kind of person should I be? or What is the right course of action? The main purpose of a theory is to provide consistency and coherence in our decision making. That is, an ethical theory gives us a common approach to various problems. If we have a theory, we do not have to figure out where to begin each time we meet a new problem. A theory also allows us to develop some degree of consistency in our decision making; we aim at reliable patterns of practical reason, not whimsical emotional or uncritical reactions. We will begin to see how different values relate to one another. If we are consistent and coherent in our decision making, we will have a greater degree of internal unity and integrity in our decision making. Given the complexity of problems in bioethics, these qualities are extremely worthwhile.

One can organize different kinds of ethical theories in two categories: action-based theories and character-based theories. There are two very basic sets of moral questions one can ask.' The first

kind of questions has to do with human behavior in action: an ethics of doing. The second kind of questions has to do with being human itself: an ethics of being. Generally speaking, all ethical theories address aspects of the moral life: what it is, how to live it, and so on. Action-based ethical theories are basically oriented to answering ethical questions of the first kind-ethics of doing. They attempt to figure out what is the right or good thing to do. We already discussed two kinds of action- based theories (deontology and teleology) in chapter 1. Character-based ethical theories, in the broadest sense of the term, are basically oriented to answering ethical questions of the second kind- ethics of being. They attempt to figure out who a good person is and what such a person ought to do.

Our goal in this section is to introduce the basic structures of various ethical theories and briefly sketch some advantages and disadvantages of each. Unfortunately, we cannot provide a thorough examination of ethical theories that many moral philosophers have proffered. Instead, we have provided a list of works in the bibliography regarding moral philosophy and theology of ethical theory. Thus, this section is not exhaustive of (a) the variety of ethical theories or (b) the analyses of them.

Action-Based Ethical Theories

Action-based ethical theories address moral questions pertaining to human behavior in action. In this regard, an ethics of doing can move in two directions: an evaluation of the means (the act, process, or way a human behaves) or an evaluation of the ends (the ends, outcomes, or consequences of the particular human behavior). On the one hand, we saw in chapter 1 that teleological ethical theories, like consequentialism, assess the values, goods, benefits, or utility in relation to the disvalues, evils, harms, or burdens in the results of a human action. Deontological ethical theories, on the other hand, assess the action itself by reference to particular rules, duties, or norms, which ask primarily whether the means constitute or violate such duties.

Teleological Ethics. An action-based ethical theory, like consequentialism, answers the question, What should I do? by considering the consequences of various options in a decision. That is, what is ethical is the option that brings about consequences that have the greatest number of advantages over disadvantages or that generate the greatest good for the greatest number of people. Basically, in this theory, one determines what is moral by looking to outcomes, to consequences, and to the situation.

The ethical theories of situation ethics and utilitarianism are common types of action-based, consequentialist ethical theories. We discussed situation ethics in but another common consequentialist theory is utilitarianism, which Jeremy Bentham and John Stuart Mill developed.' Utilitarianism states that what is moral maximizes "utility" in the consequences of an act-for example, the greatest good for the greatest number of people. A principle of utility specifies what constitutes "utility" or what is "useful." A consequence (or set of consequences) may have utility if (on balance) it evokes happiness, including, pleasure, health, knowledge, and so forth.

The major benefit of this kind of theory is that it looks to the actual impact of a particular decision and asks how such a decision will affect people. Consequentialism is attuned to the nuances of life and seeks to be responsive to them. The major problem of this theory is that the theory itself provides no standard by which one could measure one outcome against another. That is, while being sensitive to the circumstances, consequentialism has no basis for evaluating the relative merits or problems of

one outcome against another.

Deontological Ethics. Deontological ethics looks to one's obligations to determine what is moral. This theory answers the question What should I do? by specifying one's obligations or moral duties. That is, the moral act is one in which one meets his or her obligations, his or her responsibilities, or fulfills his or her duties. For a deontologist, obligations and rules are primary, for only by attending to these dimensions of morality can one be sure that self-interest does not override moral obligations. The Ten Commandments, Kant's Categorical Imperative,' and certain forms of rights ethics are probably the most common examples of deontological ethics.

Rights ethics is a theory that resolves moral dilemmas by first determining what rights or moral claims are involved. Then one settles dilemmas in terms of a hierarchy of rights. Paramount for a person of this orientation is that the moral claims of individualstheir rights-are taken seriously. Rights may include duties, privileges, or entitlements. The duties relative to certain rights may be the duty of the subject (e.g., the right to vote implies a duty and a privilege to vote) or a duty on others (e.g., the right to privacy suggests a duty not to invade another's privacy). The ethical theory of rights is a popular one in our American culture. Consider, for example, the central role this theory plays in abortion and health care access debates.

On the one hand, the main advantage of a rights theory is that it highlights the moral centrality of the person and his or her moral claims in a situation of ethical conflict. On the other hand, this theory does not tell us how to resolve conflicts of rights between individuals. The theory makes the claims of the individual central without telling us how to resolve potential conflicts of rights.

The major benefit of deontological ethics is the clarity and certainty of its starting point. Once the rules are known, the duties determined, or the rights identified, then what is ethical is evident. The major problem is the potential insensitivity to circumstances and consequences. By looking only at duty or rights, one may miss important aspects of a problem.

Character-Based Ethical Theories

Character-based ethical theories address moral questions dealing with who good persons are and how they ought to relate to one another. In these ways, an ethics of being deals with character traits (e.g., virtues and vices) as well as human relationships. Many philosophers have critiqued character- based ethics for being too subjective or relative to individuals or their particular communities. With feminism and the work of scholars such as Edmund Pellegrino and David Thomasma, Alasdair Maclntyre, Carol Gilligan, and others, however, ethics of being has seen a revival in recent years. We will consider briefly three kinds of character-based ethics here.

Virtue Ethics. Virtue ethics comes from a long line of philosophers and theologians dating at least all the way back to Ancient Greece. For example, Aristotle developed a virtue-based theory of ethics,' and Thomas Aquinas built upon Aristotle's work for Christianity. More recently, Alasdair Maclntyre revitalizes this approach to ethics; Edmund Pellegrino and David Thomasma apply it to the practice of medicine.' James Keenan asks what virtue ethics can bring to discussions of the new genetics.` In its basic form, virtue ethics is about making a habit of good behavior; that is, making good behavior a part of who we are. A virtue, or a vice, is a character trait that describes one's

orientation to certain goods and the behaviors that seek those goods. Like all characterbased theories, virtue ethics sees an intimate relationship between what we do and who we are. Thus, the virtue- related questions include, What would a virtuous physician do when faced with physician-assisted suicide? What (or who) is a virtuous physician? What does it mean to be a virtuous parent? By wanting to become a virtuous parent, should I use assisted reproductive technology or adopt?

character-based ethical theory is relationality-responsibility. Charles Curran adapts this model from the work of H. Richard Niebuhr and offers it up as an alternative to consequentialist or deontological ethical models.' Stephen Happel and James Walter describe the relationalityresponsibility model as one that places emphasis on the subject of moral experience-the human person-and that uses the thematic image of "persons as responsible" to represent moral experience.' Curran outlines the basic form of relationalityresponsibility in this way:

Responsibility involves (1) response to an action upon us; (2) in accord with our interpretation of what is going on; (3) with a willingness to be accountable for any reaction to our reaction; and (4) in solidarity with the continuing community of agents. I would, however, modify this model by calling on persons to initiate action as well as respond to the actions of others."

Ethics of Caring. Lawrence Kohlberg studied human moral psychology and outlined the major stages of moral development, which culminated in a commitment to justice.'° Carol Gilligan evaluated the research, conducted her own, and concluded something very important and challenging: men and women develop differently when it comes to their senses of morality. Her book, In a Different Voice, suggests that women tend to prioritize caring above justice." Inspired in part by Gilligan's perspective, other scholars developed the approach to ethics known as ethics of caring. Ethics of caring is about a disposition to one another grounded in a transformative relationship resulting in care and one who is caring. It is arguably a character-based ethic because in this theory human relationships inform who one should be. This approach has been important in the evolution of the ethics of the healing professions, especially nursing ethics.

CONCLUSION

As you read this book and discuss the problems contained in it, you will find yourself using one or more of these theories in trying to convince yourself or others of the correctness of a particular position. You may also find it interesting to adopt one theory to see how it works and where it will lead you. Discovering the theory with which you are most comfortable, and being attentive to the methods others are using, is a first step toward gaining clarity in the discussions and debates about complex bioethical problems.

DISCUSSION QUESTIONS

1. What major ethical theory do you primarily use in decision making?

2. Can someone use more than one ethical theory in solving a problem? Why or why not?

NOTES

1. See Michael R. Panicola, David M. Belde, John Paul Slosar, and Mark F. Repenshek, An Introduction to Health Care Ethics: Theological Foundations, Contemporary Issues, and Controversial Cases (Winona, MN: Saint Mary's Press, 2007), 22-43.

2. For example, see John Stuart Mill, Utilitarianism, ed. Oskar Piest (New York: Macmillan, 1957).