Fall 2001

Conscientious Science

As we begin this period of genetic discovery, it will be important to assess whether our ethical foundations and public policies are adequate to deal with what might loom ahead, notes Eric M. Meslin, PhD, director of the Indiana University Center for Bioethics.

In 1962 the science fiction writer Arthur C. Clarke observed that any "sufficiently advanced technology is indistinguishable from magic." Four decades later, Clarke's insight is particularly poignant given the way the public's moral imagination has been captured by topics such as assisted reproductive technologies, genetic testing, somatic and germ-line gene transfer, tissue engineering, and most recently, human cloning and stem cell transplants.

At the dawn of the genetic century, with the sequence of the human genome known and the promise from this knowledge just beginning to be realized, it may be tempting to think of all technologies as having magical powers. After all, genetic knowledge can be so powerful, personal, and intergenerational that it can provide information about the past, present and future. The impact of genetics on daily life will be profound, to be sure. And yet it would be wrong to assume that older technologies - such as iron lungs, dialysis machines, organ transplantation or medical imaging - were any less promising when they were first developed or that the public was any less excited by them.

What technologies have in common is their ability to both inspire and frighten, to challenge and to empower. This is because advances in science and technology always raise important ethical, social, legal and political issues, and society often finds itself struggling to balance the potential benefits against the risks. For more than thirty years, a significant amount of academic scholarship, teaching, research and professional practice has been carried out on these issues.

Bioethics is the name given to this collection of topics and the approaches used to understand them. For most of the past three decades, advances in health care, science and technology have been accompanied by an equally intriguing explosion in bioethics activity. Hospitals have hired professional clinical ethicists and established ethics committees. High-profile legal cases have focused on topics ranging from withholding hydration and nutrition to the quality of informed consent forms. Federal regulations have been developed for the protection of the rights and welfare of human subjects. Universities, including IU, have created institutional review boards to evaluate research projects. Many medical schools have added bioethics courses to their curricula. Professional associations have established ethics standards for their members. And more than forty countries have created national bioethics commissions to provide policy advice to their governments on a variety of issues.

A More Informed Public
In the process, much has been learned. For example, unlike earlier times when new medical findings were disseminated by word of mouth and print media, today, access to the Internet has led to greater awareness of both great success and tragic outcomes. The public regularly uses the Internet for health information. It is not uncommon for patients to bring printouts of the latest health information when they visit their physician. Some communities, the members of which may be potential participants in clinical trials, participate more actively in the design and conduct of clinical trials. We have also seen significant changes in behaviors of health care providers. Whereas forty years ago it was common to withhold certain types of medical information from patients for fear that "bad news" would cause serious stress or anxiety, conversations between physicians and patients are now more open and inclusive.

Much has also happened methodologically to bioethics. The theoretical foundations for this field have relied principally on moral philosophy and theology. Indeed, traditionally, one of the few accepted methods of bioethics research was to employ conceptual analysis to describe and explain important terms in bioethical discourse. Bioethics was a field often relegated to the back burner of daily practical policy debate, because discussions often produced equally valid but opposing conclusions - a situation that frustrated clinicians and policymakers alike.

Those underpinnings have changed. Today, bioethics scholarship and practice draw from jurisprudential analysis, qualitative and quantitative empirical studies, and narrative and case-based approaches, among others. Important contributions to understanding and resolving contemporary bioethics problems are made by philosophers, economists, political scientists, epidemiologists and management scientists.

The Global View
Increasingly, bioethicists' views are sought out by the national news, the U.S. Supreme Court, major health insurance plans, and pharmaceutical companies. Bioethics also has become international in scope. Not only have many countries established national bioethics commissions - the United States has created five such commissions in the past twenty-five years - research is now being conducted by large teams from many different universities, recruiting thousands of research participants, with the support of private companies, philanthropic organizations and non-governmental organizations. We no longer live in a culturally insulated world, and U.S. researchers and clinicians have much to learn from their colleagues in other countries.

Such developments bring new responsibilities as well. Today's bioethicist must be constructively self-critical, respectful of diverse views, and keenly aware that not all bioethics issues involve high technology and dramatic moral dilemmas. Some long-standing issues will continue to occupy our attention: poverty, ensuring access to basic health care services, care of the dying, professional conduct, communication between providers and recipients of health care, and improvements in public health efforts.

This is the background that has contributed to the creation of the Indiana University Center for Bioethics, a multidisciplinary, university-wide venture that will critically examine these and other bioethics issues (www.bioethics.iu.edu). Supported by the IU schools of medicine, nursing, liberal arts and law, the Center is being built on a strong research base, and will provide a resource for teaching, clinical ethics activities in the hospitals, policy development and public outreach. The IU Center for Bioethics will draw upon strengths from both the Indiana University-Purdue University Indianapolis and Bloomington campuses and the recently established Charles Warren Fairbanks Center for Medical Ethics at Methodist Hospital.

While there is no shortage of issues and topics the Center will address, the recent $105 million Lilly Endowment gift creating the Indiana Genome Initiative (www.ingen.iu.edu) is an example of an exciting opportunity. A portion of the INGEN budget allows the Center to develop a program in ethics, genomics and public policy (EGPP). The bioethics program - one of six in INGEN - will bring together prominent researchers whose responsibilities include collaborating with the other science programs of INGEN and developing a nationally respected bioethics resource on a variety of issues such as research involving human biological materials, genetic privacy and informed consent for genetic testing.

Equally important, the EGPP program will develop ways of actively engaging the public in an ongoing conversation about the ethical issues arising from genomics research. In this way the EGPP program parallels scientific developments from the Human Genome Project; knowing the genetic alphabet of the genome is just the first stop in understanding how genes work and how to prevent and treat genetic disease. Similarly, knowing the ethical issues was just the first step in understanding how society can understand what they mean for our citizens and how to develop appropriate practices and policies.

As we begin this era of genetics, it will be important to assess whether our ethical foundations and our public policy are adequate to deal with its possible consequences. It promises (and will surely deliver) biopharmaceutical products with many benefits and few risks, innovative diagnostic capabilities and novel health care delivery systems. It will change the way medicine is taught. It will spawn more collaboration between private companies, non-government organizations, public sponsors and philanthropies. It will also enhance the opportunities for creating health and social benefits for national and global economies.

These are exciting times, but in recalling Arthur C. Clarke's observation, we should also be mindful of another piece of wisdom. The eminent physicist the late Richard Feynman once wrote, "For a successful technology, reality must take precedence over public relations, for nature cannot be fooled." Feynman's words were written not about genomics or cloning or bioethics; they were part of his dissenting opinion as a member of a presidential advisory committee investigating the cause of the space shuttle Challenger accident in 1986.

Feynman bemoaned the fact that some of his colleagues were not prepared to acknowledge the cause of the accident. He knew what we all understand: science has power; it is not morally neutral. Fifteen years after he wrote those words, the 100th space shuttle lifted off from Florida, a launch that had become so common it was not reported on the front page of any major newspaper and was distinguishable if only because of its lack of noteworthiness. Fifteen years from now, it is quite conceivable that many of our pressing bioethics policy problems will have been resolved - only to be replaced by others - and clinicians will be confronting a new set of challenges.

The one constant will be the public, still prepared to be intrigued by the magic but likely more knowledgeable about its bioethical implications.