January 26, 2005: Features

Update March 28, 2005:
RESULTS OF PAW’S ONLINE SURVEY ON ETHICAL DILEMMAS
PAW received 36 responses to its online survey of 14 hypothetical situations that were used in research on “cognitive conflict and control in moral judgment” by Princeton researchers Joshua D. Greene *02, Leigh E. Nystrom, Andrew D. Engell, John M. Darley, and Jonathan D. Cohen. You may recognize some of these examples as dilemmas posed by contemporary moral philosophers at Princeton and elsewhere. The survey accompanied the online contents of our special Jan. 26 issue on “Exploring Ethics. ”

Click here to read the ethical scenarios and compare your responses to other PAW readers.

After Dolly
Bioethics in the public domain

By Harold T. Shapiro *64

Even in ancient times there was some attention, including by ruling elites, to bioethical issues. In those long-ago times the focus was on the appropriate nature of the doctor-patient relationship, such as in the Hippocratic Oath, and matters dealing with malpractice issues, such as those found in the Hammurabi Code and in ancient Egyptian documents. However, with the development of scientific medicine in the late 19th century, the focus of bioethics expanded to include the protection of individuals being used as “test subjects” in medical experiments. Progress was slow, and it was only after scandals such as those surrounding the Tuskegee syphilis study and the Atomic Energy Commission’s radiation experiments, and more importantly, the Nazi and Japanese World War II medical experiments on prisoners, that a coherent set of regulations protecting human subjects was adopted.

In the last decade the scope of the discipline has expanded again in response to the ethical issues raised by new discoveries on the rapidly advancing biomedical frontier. Particularly notorious in this respect have been developments in genetic science that seem both to blur the boundaries between the sacred and profane and to extend humankind’s power to control its destiny in new ways. Good examples are the experiment in which a sheep known as Dolly became the first mammal to be cloned from an adult cell, and the isolation of human embryonic stem cells, which advanced the potential development of new clinical techniques but required the destruction of early-stage human embryos. This development raised, once again, the moral status attached to the early-stage embryo.

These ethical issues are also issues of public policy. I served as chairman of a government advisory committee, the National Bioethics Advisory Commission, when the issue of “cloning” and human embryonic stem-cell research became matters for public policy to address. Following is an excerpt adapted from a book to be published this year by Princeton University Press, A Larger Sense of Purpose: Higher Education and Society, in which I describe how we went about the task.

The most immediate reason for constructing some type of public-policy response to the Dolly experiment was the initial public hysteria that greeted the news of Dolly’s birth in 1996. Although some aspects of this hysteria may seem quaint now, it was very real at the time. The public’s emotional reaction was conditioned both by a rather vast “Frankenstein” literature, together with a set of longer-term concerns reminding us that what was happening was not necessarily right. It was also true that some quarters of the scientific community issued uninformed statements that revealed a lack of knowledge of some very significant findings that had accumulated for decades regarding the DNA content of cells. All this rhetoric seemed to be providing support for the discredited notions of genetic determinism.

Beyond the hysteria and misinformation, an additional and well-articulated set of concerns centered on the threat that the use of this technology for human reproduction would somehow undermine our sense of individuality, our uniqueness, our “human nature.” There also was concern over the possibility of using this technology to develop a new eugenics, and fear that the use of this new technology would cause us to cross the “natural” boundaries between the generations. Yet another issue was that the widespread use of this technology would somehow undermine the value or worth of human beings, not to mention the cloned individual’s more restricted freedom and autonomy to construct his or her life from as open a set of possibilities as possible. In any case, following the news of the Dolly experiment, the National Bioethics Advisory Commission did receive an immediate call from the White House, and we were asked to report our recommendations within 90 days. First, we solicited advice and counsel from a wide variety of experts. Second, we looked for ways to triage the issue in order to select those aspects we could deal with, given our time constraints.

With respect to advice, we first asked a number of scientists to brief the committee on the scientific issues involved. Next, we looked to moral philosophy to gain some inspiration and insight on how we might deal with the ethical issues involved, particularly with examining the matters of moral status and the threat to personal identity and self-worth that many critics thought was presented by the notion of human reproductive cloning. We also turned to a wide variety of religious leaders and scholars to see if they could help us think through these same issues and inform us of their views on the matter. Finally, we solicited the views of the scientific community and others on the public-policy issues.

A number of things became almost immediately clear. First, although moral philosophy and theology provided us with a great deal of inspiration and tools with which to analyze the issues, their various conclusions and advice on the issues matched the full spectrum of public opinion. Indeed, advice on what constituted ethical use of this new technology varied from the requirement to use this technique as if it were safe and morally worthy, to the position that it was per se a sin to engage in such “unnatural” or “God-like” activity. Second, the scientific community’s principal concern was the traditional one — namely, to have the public provide resources, but to avoid any government interference with the scientific agenda. Finally, it was almost immediately apparent that, at the time, the impact of the procedure was not fully understood and was demonstrably unsafe.

For the moment, the obvious safety issues (to both mother and the developing fetus) made it quite easy to address the short-term public-policy issues. It was quite clear also that moral philosophy alone could not provide a compelling enough case to solve the public-policy problem. We could even put aside for the moment both the serious constitutional issue of whether the Supreme Court would allow any regulation by the states or federal governments in the reproductive arena, and the careful evaluation of the growing literature on the experience of natural clones, namely, identical twins.

Our decision was to focus only on the use of somatic cell nuclear transfer cloning for the specific purpose of creating an infant. We concluded that at the current time, because of the many safety issues, it was ethically unacceptable in the public or private sector to use this technology to create a child. Although, in our minds, the safety issues were the paramount and trumping ethical issue of concern, we also believed that it was necessary to encourage further public discussion, and to do more science. (As an aside, it was not entirely clear how the safety of this technique for human reproduction would be ethically demonstrated.) Having reached this decision, the only remaining controversial issue was whether legislation was advisable since this is what would be required to cover both the public and private sectors, or whether an executive order that would cover only the expenditure of public funds was sufficient. We opted for the former strategy, which events have demonstrated was a tactical error. Here was a case where the long-run ethical issues were difficult to assess, but where the immediate ethical and public-policy imperatives were quite easy to identify.

The ability to isolate and culture human embryonic stem cells was an important scientific achievement that immediately generated both excitement and concern. As with the Dolly issue, many had forgotten that scientists had known for some time that we contain self-renewing and multipotent cells, and that in mammals, embryonic stem cells had a great deal of multipotency. Let me turn, however, to the ethical issues surrounding research involving the creation and use of human embryonic stem cells. The first question to ask is whether or not human embryonic stem-cell research raises any ethical issues. If this question can be answered in the affirmative, the next question is whether this is also a public-policy issue, since not all ethical or bioethical issues are matters for public policy. To begin with, therefore, why does this activity raise ethical issues?

In view of the widespread and continuing public discussion of this issue, I can simply note that such research, which involves the destruction of embryos in order to isolate the stem cells, raises the issue of what moral obligations, if any, we have with respect to the fertilized ova and the so-called early embryo. On the one hand, there are those who feel the moral status of the fertilized ovum and the early embryo is the same as that of a living person. Given such beliefs, one could not consider the destruction of the embryo merely for the sake of scientific or clinical progress, especially since it involves the “murder” of innocents. On the other hand, many believe that our moral obligations to the fertilized ovum and early embryo are not that comprehensive, and that in the context of a broader set of moral obligations, we have to consider also what we can do to relieve the burden of disease for future generations.

More specifically, this debate raised such central issues as the following: Does even the very early embryo enjoy the moral status of a live-born child? If so, is its purposeful destruction for any reason an act of homicide? If not, what state protections should it benefit from, if any? Is it logically possible to say when “human life” begins and if “human life” only needs protection at certain stages of development?

Opponents of embryonic stem-cell research generally support the view that the embryo, at all stages of its development, has the moral status of a live-born child. Moreover, they often remind us of the sacredness of human life and that in their view human life, in the moral sense, begins with the fertilized ovum. I often have thought that for many persons of faith it must have been a little disconcerting, or even a form of idolatry, to witness any object, including human life, achieve “sacred” or God-like status. Moreover, in a society that freely practices war, capital punishment, encourages in vitro fertilization (IVF) clinics, and tolerates inadequate nourishment of young children, the emphasis on the “sacredness” of the life of early embryos seems to me to have a rather empty ring to it. Furthermore, such concerns, whether valid or not, must be dealt with in the context of another ethical imperative — namely, to do what we can to relieve the burden of disease from present and future generations.

Thus, a typical ethical conflict emerges for some in trying to find the right balance between their commitment to protect one’s conception of human life at all stages of development with a generally shared ethical commitment to further the development of better clinical modalities in medicine. Such a tension would, of course, vanish if there were other equally useful research strategies, such as using adult or placental stem cells to achieve the same objectives, or if one’s moral commitment to the early-stage embryo trumped all other considerations. Given current scientific understanding and existing technological capacities, there are no easy solutions to this challenge. Therefore, research on human embryonic stem cells not only continues to raise serious and complex ethical issues, but does so in an area that has long polarized Americans.

One may ask, how do these serious ethical questions connect to public-policy issues? The answer here is that, first, the government is a very significant sponsor of biomedical research and, therefore, has its own behavior to account for. In this context, the government may have to satisfy even higher ethical hurdles than private individuals and/or organizations because its actions implicate all citizens. Second, since the protection of life — and the possible prevention of homicide — may be involved, the state has a significant interest in whether or not public funds are involved. Moreover, the government has an important mediating role when the public is sharply divided on important ethical issues. It seems quite clear, therefore, that it is important for public policy to be clear and reflect some type of stand on the serious ethical issues at stake in this particular arena.

To illustrate how actual public policy evolved over time, it is instructive to compare the National Bioethics Advisory Commission’s recommendations — encouraging the use of federal funds to support, with some restrictions regarding consent and the source of these embryos, both the creation and use of human embryonic stem cells in biomedical research — with the approach of the Clinton administration in this arena, which advocated a kind of “don’t ask don’t tell” policy, or the use of federal funds being restricted to the use of human embryonic cell lines created by others. The Clinton administration’s policy seemed to say that those who demand and pay for the destruction of embryos can be ethically isolated from those that actually do the deed! Nevertheless, the policy would permit research with embryonic stem-cell lines to be sponsored by the federal government, although to the extent that these stem-cell lines were controlled by private interests it is not clear whether university-based scientists could participate. This would depend on the nature of the licensing agreements that private firms might insist on and on the openness required by university policies. The subsequent evolution of this policy can now be seen in the Bush administration’s policy on these matters, which has mandated that federal sponsorship of embryonic stem-cell research be restricted to those cell lines derived prior to Aug. 9, 2001. Clearly, this process and policy are still very fluid. While as a matter of public policy I prefer the position of the Clinton administration to that of the Bush administration, the Bush administration’s policy is more ethically coherent. Both, however, limit the possibilities for participation by a significant proportion of the nation’s leading biomedical scientists.

The United Kingdom, on the other hand, has developed a much more coherent, thoughtful, and publicly transparent policy, which regulates stem-cell and associated research areas in a uniform manner in both the public and private sectors. In the United Kingdom, the issue of human embryonic stem-cell research also has been very controversial, involving many debates in both houses of Parliament. As already noted, the first major distinction between the British and the U.S. policy is that in Britain there is no distinction between the rules that govern the private sector and the public sector. In the U.S. it is “anything goes” in the private sector and severe restrictions in the public sector. One result of this is that we have very little idea of what is going on. Second, while it is quite legal to both create and use new embryonic stem-cell lines for biomedical research within the United Kingdom, all such activities require a license, which is available only if the proposed research passes scientific muster, if appropriate consent is obtained, and if alternate approaches are less promising. In Britain, therefore, the entire enterprise is open fully to public scrutiny. In both nations, it seems quite clear that most observers thought that serious ethical issues were at stake and that public policy ought to take a stand on the issues.

Among other approaches, the German Embryo Protection Act prohibits all in vitro experimentation on the human embryo that is not in the interests of the embryo itself, thus prohibiting the production of human embryonic cell lines. The Universal Declaration on Human Rights and the Human Genome adopted by UNESCO on Nov. 11, 1997, however, does not take a position on the moral status of the embryo. In all nations, public or international policy is trying to balance two competing ethical claims — namely, our ethical obligation to relieve human suffering and disease, and our ethical obligation to give the utmost respect to all forms of human “life.” Perhaps the most important thing to remember amidst all this controversy is that there remain very substantial scientific barriers to overcome before the potential of stem-cell therapy can be realized in an effective clinical modality.

One of the great responsibilities facing us in the 21st century is to consider the social and human repercussions of our rapidly accumulating new knowledge and the appropriate stance of public policy in this respect. Irrespective of one’s views on the ultimate impact of advances in biomedical science on the evolving human condition, there seems to be a clear need for all thoughtful citizens to consider the ongoing impact of these developments on those institutions, values, and other cultural commitments that sustain our individual and common life, since it is in these areas that science and technology gain moral relevance. In addition, the quality of our society will be determined by the moral norms citizens genuinely aspire to reflect.

Moreover, since science is a social institution, and the application of science is a social decision, the world of science and the world of meaning are inextricably linked. Indeed, the scientist, the poet, and the philosopher share, in some sense, closely related goals. In many ways, the scientist’s search for ultimate causes and the creative artist’s search for the ultimate realities of our experience are, at least emotionally, similar quests. Both try to draw aspects of the natural world and the human experience together in a comprehensible fashion. At their best, both require deep reflection, a broad imagination, a certain humility, and a willingness to experiment with disconcerting ideas. As a result, it is often the case that similar characteristics are found in all thoughtful accounts of the human condition — whether generated in the laboratory, the library, the scholar’s study, or the narratives that give meaning to all that we do.

However, we face a significant quandary in this respect. Even among thoughtful observers, there is little agreement on the relative importance of the various ethical and theological issues raised by many new scientific developments. In addition, there is no agreement on which philosophical approach is most relevant or how any particular approach might inform public policy or private action in various arenas. Indeed, there seems to be little convergence on either the right questions or the right answers. Thus, while the various philosophical approaches provide substantial inspiration and guidance to our ongoing discussions and concerns, we are often unable to arrive at a consensus solely through a process of philosophical reasoning and deliberation. We have to reach actual decisions in some other way — using supplementary and newly developed resources — and we have to accept the fact that we may not always fully resolve some of the more contested nuances and difficult issues. Anxiety and ethical controversy, therefore, will continue to accompany us on this journey. As a result, it is particularly important that we find venues for serious conversations between scientists and nonscientists where all participants leave open the possibility of changing their minds on the appropriate uses of our new powers. It may be time for scientists to take the initiative in these matters since their knowledge gives them special responsibilities.

Over time, different professions were considered to have special responsibilities and, to some extent, authority in the moral realm. Indeed, at times these special moral commitments took the form of formalized oaths, although most often they were the expression of certain moral traditions and responsibilities that had become accepted as one sign of a person’s professional responsibilities. Perhaps we are at a moment where scientists should feel a special responsibility to help society deal with the ethical issues being generated by the great successes taking place daily on the scientific frontier.

Perhaps the principal lessons of all this are the following:

1. The expressed anxieties we hear are real. Not only do scientists need to educate others about the potential and the limitations of science, but scientists need to listen to the public’s deeper distress and consider the special limitations of science in dealing with issues of meaning.

2. We should not confuse what we can do or are doing with what we should do. We need to confront the issue of deciding exactly what are the ethical uses of new knowledge.

3. The special public-policy challenge in liberal democratic societies may be characterized by the following questions: When is it legitimate and useful for the government to act, and what instruments — for example, regulations, legislation, and incentives — should be deployed?

4. Living an ethical life and setting public policies in ethically contested areas are challenging matters in that there is a constant and necessary need for both individuals and policy-makers to carry out complex moral calculations.

5. The world of science and the world of meaning are so closely connected that realizing the potential of one requires dealing with the other.

This last conclusion has, I believe, important implications for a university’s teaching programs. It provides yet another dimension to the argument that we need to do something that lowers the barriers between disciplines, between graduate and undergraduate education, and between professional education and the rest of the university. If we are going to have serious conversations between scientists and nonscientists that include both public-policy makers and others interested in the evolution of our society — conversations that leave open the possibility that participants may change their position on, for example, the appropriate use of our new powers — participants will need a capacity to share a common language and understand the hopes and aspirations of the “other.” Universities can contribute to this critical requirement of contemporary citizenship by designing curricula that allow for such informed conversations throughout the student’s experience on the campus.

Both those driving the biomedical frontier ahead and other thoughtful citizens share a common concern about finding a way to deploy this new knowledge in a manner that not only gives it moral content and human meaning, but relieves certain anxieties about the future. After all, what makes humans special, if not unique, is our highly developed potential for empathy, or, to put the matter more generally, a potential capacity to put ourselves in the minds of others and to understand what they believe and desire. Scientists, therefore, can put themselves in the minds of nonscientists and vice versa so that we can understand each other’s needs and beliefs better. This is what ethics is all about, and it remains central to our ability to adapt our narratives and belief systems to our increased understanding of the natural world.

If those advancing the scientific frontier wish to reach out to the public for support, understanding, and trust, they will have to understand and directly address the anxieties that are certain to continue to characterize public concerns and influence public policy. The values of science cannot be separated from the values of society, and the vitality of the scientific enterprise can only be sustained if the society at large is committed to it. Most importantly, however, all scientists and non-scientists engaged in thinking carefully about the future of the human condition, like artists, cannot escape the anguish and uncertainty involved in trying to create a better future, especially when the ethical questions go to the heart of what it means to be human. Remember — it is difficult to understand who we humans really are, even harder to know what we should be, and most daunting of all to perceive who we might, or should, become.

President emeritus Harold T. Shapiro *64 is a professor of economics and public affairs at Princeton.

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