Bioethics Institute:
"Everybody's Territory"

"What I'd like to know," asked Offit in mock seriousness as he looked around, "is just who's running the university?"

Offit was joking, of course, and he got a laugh from those present. But the involvement of so many from among the university's top leadership points to the fact that the Bioethics Institute, now in its second year, has attracted considerable attention and support in its relatively short existence.

Offit, former chairman of the university's board of trustees, serves as advisory board chairman for the fledgling institute. Among those attending were Alfred Sommer, dean of the School of Hygiene and Public Health; Ronald R. Peterson, president of the Johns Hopkins Hospital and Johns Hopkins Health System; Edward Miller, CEO of Hopkins Medicine and dean of the faculty of the School of Medicine; Steven Knapp, university provost and vice president for academic affairs; Sue Don-aldson, dean of the School of Nursing; and university President William R. Brody.

"I think the widespread interest evident in the first advisory council meeting reflects the significance of the problems we address," said institute Director Ruth Faden. "These are the kinds of issues that can be understood by all of us. This is every person's territory."

The Bioethics Institute is dedicated to bringing the moral dimensions of health policy, medical care and the biological, behavioral and social sciences to the forefront of scholarship and practice. Faden, who is the Philip Franklin Wagley Professor of Biomedical Ethics, said public education is one of the institute's primary functions. In this area, a nationally recognized advisory board should prove especially helpful.

"Health care professionals and others in the academic world have certain skills but no pipeline to the moral truth," she said of the council's broad-based membership. "One of our goals is to help elevate public discourse about issues that are public policy problems as often as personal problems."

Traditionally, medical ethics have focused primarily on issues surrounding the doctor/patient relationship. When is it acceptable to withhold medical treatment? In a situation of limited medical resources, who should receive treatment first? Does a patient have the right to refuse life-extending medical treatment?

In recent years, however, the number, nature and complexity of ethical issues in health care has grown in direct proportion to advances in the biological sciences. Because the issues often cross disciplinary boundaries and extend far beyond the realm of human medicine, the term "medical ethics" has been supplanted by the more comprehensive concept of "bioethics." Issues unimagined just a decade ago, such as genetic privacy and mandatory AIDS testing, have pushed their way to the forefront of public policy. The Bioethics Institute was established to respond to these and similar issues.

And though these issues may be complex, they are hardly abstract or merely academic. The public need for leadership in bioethical study and research was aptly demonstrated when, in the early 1990s, news stories began surfacing of widespread radiation experiments conducted by the federal government on human subjects during the Cold War. Often, it was charged, the human subjects had little or no understanding of the nature of the experiments and the possible consequences they faced.

In January 1994, President Clinton appointed Faden chair of a special government Advisory Committee on Human Radiation Experiments. The committee was charged to investigate reports of possible unethical experiments involving radiation funded by the government during the period 1944 through 1974. In 1944 the first known human radiation experiment of interest was planned, and in 1974 the government adopted more stringent regulations concerning the use of human subjects in scientific experiments.

Faden's group worked amid considerable national and international attention. Thousands called the special toll-free hotline established by the government to investigate claims by people involved in radiation experiments or their surviving relatives. The committee held 16 public meetings and many additional public forums, and they took testimony from more than 200 witnesses and dozens of medical professionals.

In October of 1995, the group issued its final report, recommending that the government make financial restitution to some experiment victims and their families. Further, the committee recommended that the government formally apologize to subjects of radiation experiments, release hundreds of classified documents relating to the experiments and undertake certain reforms to assure that similar mistakes are not repeated in the future.

On March 27, the White House released a special report, "Building Public Trust: Actions to Respond to the Report of the Advisory Committee on Human Radiation Experiments," in which President Clinton commended the work of the committee and detailed the reforms and changes instituted by the federal government in response to the committee's report. In addition to making thousands of radiation experiment documents available online at http://hrex.dis.anl.gov, the president ordered sweeping reforms in one area of research of critical concern to Faden's committee, secret or classified research. Specifically, the president forbade federal agencies from conducting human experiments without first obtaining informed consent, and he established review committees and other safeguards in all such future experiments.

Faden said the work she did for the president's special advisory committee is indicative of the need for increased research and training in bioethics. That is why what was originally a less formal group of 60 or so faculty members who met monthly to discuss issues of medical ethics was subsequently distilled into the Bioethics Institute, a university-wide program meant to encompass the many difficult ethical issues arising in science and medicine today. Earlier this year, university fundraisers were able to announce a $5 million commitment to establish a permanent endowment for the institute, made by Phoebe Berman of Green Spring Valley.

"The kind of support we are receiving says not only this institute has arrived, but more importantly, the whole field has arrived," Faden said. "I believe the creation of the Bioethics Institute is of importance to the nation, not just to the university. There is widespread recognition that we have to have programs like this to get the moral and social dimensions of these rapid advances in science and medicine on the table."