"Bioethics touches everybody," says Dr. Evan De Renzo. "It is everyone's Mickey Mantle, everyone's newspaper reading, everyone's six o'clock news." As a 14 year old, De Renzo "sat bedside" with people who were dying, discussing and thinking about "what is meaningful in life and what it means to get to the end of a life and leave the world having touched others positively, even in tiny ways." De Renzo suspects she was born with "an old soul," which could account for her lifelong interest in the world of consequences and adult ideas.

In today's high-tech biomedical world, individuals and communities face and grapple with a growing number of bioethical issues: When might it be justifiable to direct limited resources to very-high-risk but very-low-success procedures, such as the separation of Siamese twins? Which individuals deserve to be at the top of the waiting list to receive scarce transplantable organs? Who has the rights to frozen sperm and other biological materials outside the human body? Bioethicists are often the people who guide the thorny discussions of the risks and benefits, pros and cons, and consequences and outcomes of these and other procedures, choices, and actions.

But these fairly glitzy issues are not what De Renzo calls her "daily fare" as a bioethicist at NIH. She says that she and others in her department mostly participate in "everyday moral discussions" that take place all the time in hospitals.

These discussions can include bioethicists, patient-volunteers and their families (at NIH, patients are called patient-volunteers, because they volunteer to participate in experimental studies of new drugs and treatments), doctors, nurses, social workers, theologians, people from the community, and others. De Renzo says that participation in these discussions is "very satisfying and often deeply moving, in large part because of the immense courage shown by the patient-volunteers." Although at times sorrow and grief are intense --"the terrible diseases that we deal with can be humbling"--for the most part, says De Renzo, she "feels good and 'up' in working through daily decisions."

The prime function of these discussions is to help those who need assistance make decisions and choices that ensure that the best interests of the patient-volunteers in the hospital always stay front-and-center in everyone's considerations. What this means in testing a new drug, for example, is that the balance will always be weighted toward the possibility of some benefit for (or at least no harm to) the patient-volunteer rather than toward achieving the experimental goal. What this means in terms of patient care, in general, is that the patient's well-being and a good quality of life always come first.

De Renzo says she did not follow a typical trajectory to become a bioethicist. Most bioethics professionals study philosophy, medicine, or theology. De Renzo studied government and political philosophy in college and aging (gerontology) and human development in graduate school. As a student, she says, she never focussed on a narrow job category but instead framed the most interesting questions she could. These, she says, all were concerned with the interplay of medicine, adulthood, and moral behavior. De Renzo subsequently studied bioethics at Georgetown University's Kennedy Institute of Ethics and continues taking advanced courses in ethics and moral philosophy.

Several times a week De Renzo goes on hospital rounds with physicians, nurses, social workers, and the other members of the "rounding" team. As the group visits each patient-volunteer and discusses details of the person's illness and treatment, De Renzo points to any moral dilemmas or issues that need to be addressed or that can serve an educational purpose.

On recent rounds, for example, De Renzo took the lead in formulating the team's approach to explaining to a patient-volunteer what reasonable expectations she could have, expectations that "would not deaden her appropriately placed hopes." The patient had had cancer but had been free of disease for many years. Now, tumors seemed to be returning. The patient was participating in a Phase I trial of a new drug, one that could not be anticipated to provide any benefit to her. (A Phase I trial is typically one that examines how much of a strong drug can be given without making the patient feel sick. The likelihood of a cure from participation in these trials is usually zero, and thus participation in them is looked on as an altruistic act: far down the road some other people with the same disease might benefit from what had been learned during the Phase I trial.) De Renzo says that, while the discussion was nothing out of the ordinary, the process and conclusions "play out differently for each person and clinician as they dance the dance of patient-to-physician and subject-to-researcher communications. It is an intricate dance," she says, "of many steps that goes on for a very long time; it is danced more elegantly by some than others."

It is important for people who are ill to have some hope, notes De Renzo, but the nature of hope changes during the course of a serious illness. "At the beginning, hope is for a cure. But, if that becomes an impossibility, then patients hope for comfort and pain control, for time to tie up loose ends, for a good death, and, with a Phase I, for an altruistic contribution."

Illness is never easy, but there are ways to make its management smoother. De Renzo says that one thing she tries to do is help people acquire the tools they need to navigate through the confusing maze of decisions they encounter in the hospital. Not long ago, she says, doctors pretty much single-handedly made medical decisions, and it was the rare patient who got involved in his or her own care. Today, more people are asking more questions about their care and the quality of the life they can expect after they go through whatever medical procedures are being recommended. In fact, notes De Renzo, the physician-patient relationship has changed so much in recent years that medical professionals become concerned if patients show no interest, rather than too much, in their own treatments.

Several factors, says De Renzo, appear to have contributed to this change. People grew more adept at challenging authority during the Viet Nam War, and they learned to get involved in the decision-making process when it affected their lives through participation in the Women's Movement, the Civil Rights Movement, the Consumers' Movement, and other movements. There has been a general shift "away from paternalism as a result of patients' understanding that physicians don't always act as good fathers . . . and, in addition, no doctor can know the subjective views of a patient as well as the patient can him/herself."

To help patients, says De Renzo, she tries, for starters, to translate medical jargon into real words and concepts that patient-volunteers and their families can comprehend. "The English that medical practitioners speak just isn't the same" as that of the general public, she says, and many families -- perhaps most -- simply come to the hospital unequipped to deal with the foreign-language situation that they face.

De Renzo also familiarizes patient-volunteers and their families with the resources that are available to them in the hospital -- one valuable one being the bioethicists who can be called by beeper for a consultation 24 hours a day. Most people have some idea what the doctors and nurses and technicians and other hospital staff members are there for. Few probably understand the roles of the bioethicists.

In fact, says De Renzo, many patient-volunteers and their family members are suspicious when they learn that a bioethicist is on rounds. They worry that the presence of a bioethicist indicates that something is abnormal. But, she adds, "as soon as I ask a question that the patient-volunteer or family member has thought about but hasn't asked or was afraid to ask, [suspicion turns to relief and] they are comfortable that I am there."

De Renzo adds that, even the most resistant medical professionals, once given the opportunity to interact, shift from being her opponents to acting collegially and seeking her counsel. The bottom line, according to De Renzo, is that, when people learn to disagree respectfully, patient care is enhanced. And her mission is to help patients get the most out of their care while working to assure that the NIH conducts important, productive research.

A recent beeper consultation involved a discussion about how a young Asian woman would die. The woman had designated her brother as her spokesperson, because they were close, he spoke English well (the parents did not speak English), and he understood what sorts of life-sustaining procedures his sister was and was not willing to endure.

The woman could no longer breathe without a ventilator. Her brother knew that this was the kind of intervention that his sister did not want. But, the parents wanted her to have it and, indeed, everything else that might keep their daughter alive, even if she could not really be said to be living. The son was caught between his loyalty to his sister and the cultural taboo of contradicting the wishes of his parents. The intervention of the bioethicists helped the family and hospital staff accommodate the discrepant needs of the parents and the dying woman.

"Bioethics discussions are values discussions," says De Renzo, "and, therefore, hierarchies have no place there. Care and well-being are in everyone's domain. Power relationships, which are so apparent in other medical discussions, have to be flattened and everyone's voice given equal weight."

It is for this reason that as wide-ranging a group of people as possible participates in review boards. At NIH, all proposals for clinical experiments are reviewed by an Institutional Review Board (IRB). The IRBs examine the design of experimental treatments to ensure that the safety and protection of patient-volunteers are assured. Sometimes researchers discuss their experimental plans with bioethicists well before bringing them to the IRB; the bioethicists' perspectives are different from those of researchers, and the bioethicists can sometimes suggest valuable controls that should be built into the experiment in the design stage.

De Renzo's own empirical research addresses the ethics of including in clinical trials people who are cognitively or psychologically impaired. For example, one of her studies looks at ways of helping people with schizophrenia learn more about their own participation in studies of new drugs. How can they best learn what benefits and risks they face when they participate in a clinical trial? How can they best understand what a clinical experiment is all about and why they are even participating in it? These issues are difficult for all people to understand and especially difficult for those impaired in their ability to learn and make informed decisions.

Bioethics is "more interactive than other content areas," says De Renzo, which is why she is heavily involved in teaching, both around the hospital and nationally and locally to the general public and professionals. She finds it gratifying when she has been able to help people advance from primitive thinking -- "it's my opinion and it's right" -- to understanding the moral filters that they and others bring to a situation. She tries to help people understand how their world views shape their value preferences and choices. As people gain sophistication in these areas and are able to step back and separate themselves from their opinions, says De Renzo, they develop new respectfulness for others and can acknowledge that good people can disagree about moral issues.

Bioethicists, says De Renzo, must be comfortable dealing with ambiguity and raising difficult questions. They must show moral courage and must be willing to disagree respectfully but dig their heels in when it is appropriate. They must be resourceful in finding ways to strike balances, and this requires good counselling and interpersonal skills. For a bioethicist, says De Renzo, "rigidity is death."

The process by which decisions are made is not "set" in bioethics as it is in many other fields. The ideal situation, says De Renzo, is one in which everyone involved comes to a consensus. It is important, she says, that all participants are comfortable with having participated in the solution, whether or not they agree with the decision. If a participant is not satisfied, it is De Renzo's responsibility to continue working with that person until the person at least understands why the decision the group made is ethically justifiable. Process is a complex problem, she says, but that's what bioethics is all about.