Yale Bulletin and Calendar

November 10, 2000Volume 29, Number 10

Margaret Farley

Dr. Robert Levine

Project boosts interdisciplinary debate about bioethical issues

Three years ago, Donald Green, director of the Institution for Social and Policy Studies, established an interdisciplinary committee to promote discussion about the major ethical issues of our time -- life-and-death medical decisions, stem cell research and genetically engineered food crops, among others.

That committee soon spawned Yale's Interdisciplinary Bioethics Project. And the project, its members hope, will eventually evolve into a full-blown center with a home of its own, space and support staff for postdoctoral fellows and enough infrastructure to apply for substantial grants.

Currently, Dr. Robert Levine, professor of medicine, and Margaret Farley, the Stark Professor of Christian Ethics at the Divinity School, are serving as co-chairs of the project. They spoke recently about the genesis of the interdisciplinary forum and its agenda for the immediate future. Following are excerpts from that interview.

What prompted the Bioethics Project?

Farley: The impetus for this came from two concerns that Don Green identified: one was the need for more curricular offerings for Yale College students in the area of bioethics; the other was the awareness that, throughout the University, there have been many faculty members who do work on a variety of issues that could be put under the umbrella of bioethics. There are over 100 faculty members from all areas of the University involved in questions of bioethics and now connected in some way with the bioethics project.

What is unique about what is happening at Yale in bioethics?

Farley: Yale has a history of fostering interdisciplinary work, and bioethics is essentially interdisciplinary. Yale also is distinctive in that we encompass all of the areas related to bioethics, whereas other universities have only some. For example, we have not only a Medical School and a Law School, but a Divinity School and a Nursing School and a School of Public Health and a School of Forestry and Environmental Studies. There are people in all of these areas who are not only interested in, but who are already working on, these issues.

Levine: Most schools that have made a commitment to programs called bioethics have focused primarily on medical ethics and related matters -- ethics as it relates to the practice of medicine and research within the biomedical paradigm. Some other institutions have some interest in ecological, environmental, and agrarian ethics or values. They, in general, have not been attentive to the medical and related bioethics. Yale is extraordinary in that even before we conceived this program we had people who were internationally known in both of these areas.

What sort of research are Yale work groups involved in?

Farley: There is one on medical futility. There is one on stem cell research. There is one on physicians and the death penalty. There is one on risk assessment. There is one on genetically engineered food crops. There is one on global women's health issues. And there are others that have recently been formed.

Do you have a discussion group on placebos in drug trials?

Farley: No, but we have a series of faculty seminars in which this issue has emerged, along with many other issues from the genome project to research ethics.

Levine: We have two separate programs that occur on Wednesdays. One of the programs is concerned with bringing members of our own Yale University faculty in, and these people are asked to give us a brief overview of what their field is. They also tell us about what counts as evidence or an acceptable argument in their field, and then they describe a project that they're currently engaged in. There's another program where we invite outside speakers, prominent people in their respective fields. We have them come in on a Wednesday to give us a presentation at lunch. That evening they give a public lecture at the Slifka Center.

What do you think is driving the interest in bioethics?

Farley: While there are breakthroughs in science and useful technology, there are also whole new ethical questions that have been raised. And because they're new, nobody knows all the answers. And no one person can figure all this out. It has to be an interdisciplinary exercise. So part of our mission in this project is not only to facilitate the research of people within the University, not only to contribute to curricular needs for undergraduates and graduates, but, as a University, to provide, we hope, some kind of wisdom for the wider society.

Levine: One way to put it, although I don't think many people put it this way, is that bioethics serves as a balance against the technological imperative, which, loosely put, is -- if we can do it, we will. People in the United States can think back to the development of the atom bomb. Here is something that developed in complete secrecy. One day we were stunned to find that this enormous weapon had been dropped on human beings and destroyed first one city and then another. Later, science seemed to be developing some things that might cause some concern. Some of this new science was presented to us in fictional form by people like Aldous Huxley, when he wrote "Brave New World," and Michael Crichton in "The Andromeda Strain." People were quick to notice that it was not all science fiction, that it could come out of our genetic engineering. We have to bring people together to find a way to temper some of this with a due consideration of the values issues that are at stake.

Are economics driving the interest in bioethics, too?

Farley: There is a lot of money to be made in some of these areas. Economics is part of what is driving the technology, though I do not think it is accurate to say that this is the whole of the impetus behind it. There is, of course, money to be made in biotechnology, though I don't mean to imply that this is a completely bad thing. There is money also to be made in reproductive technology. This also is not in itself a bad thing, but it suggests the need for some kind of oversight, some way to insert ethical considerations to insure that economic factors are not the sole determinants of the development and use of these technologies. The well being of individuals and society are at stake.

How have the questions in bioethics changed in recent years?

Levine: Think back to the time of Karen Ann Quinlan. Think of how many people were stunned to hear people talking about "a right to die." Who had ever heard of a right to die? All of our thinking about rights was typically grounded in a right to live, not a right to die. We didn't have to think about that until the 1960s when it first became possible to start a heart that had stopped. Now we're talking about people whose hearts are beating, but we call them dead, brain dead.

One new term being used in bioethics debates today is "medical futility." What does it mean?

Levine: Futility is an attempt to refine an older concept that was called "extraordinary means." Extraordinary means had two components in its definition. One is that it was unlikely to work. The other was that it was unduly burdensome. Unduly burdensome has been discredited because people fished out examples of how "unduly burdensome" was being exploited. For example, in the 1950s, something could properly be considered unduly burdensome because it cost too much. However, in the managed care era, 'costs too much' picked up some different meanings which distorted the moral significance of 'costing too much.'

What futility attempts to do is to isolate the first component, "unlikely to work." The idea is that if something is highly unlikely to work, then doctors would have no obligation to offer it to patients or their families, and that patients and their families would have no obligation to accept it. The trouble is that people are arguing about "What do you mean by highly unlikely to work?"

What is the current thought on maintaining life support?

Levine: The majority of people are moving toward a position that when you are considering life support, what you're trying to maintain is a being that has the attributes that are peculiarly human -- like the ability to experience a relationship with oneself and others. Others have a very vitalistic perspective: If the heart beats, it's alive, and -- to use religious language -- you're dealing with something of infinite worth, of infinite value, and you must maintain this. The arguments are over just how unlikely is unlikely, and just what do you mean by worth, by benefit.

Farley: In 1990 there was the Wanglie case in which the concept of 'medical futility' was debated. An older woman's condition deteriorated to a persistent vegetative state. Her husband and other family members said that she had wanted everything possible to be done, and they wanted her wishes respected ­ that is, to keep her alive. The physicians said there was no benefit to the patient, that she would not even know whether she was alive, that there was no possibility she would regain consciousness. Therefore, they argued, life support systems would be futile in this case. The family, on the other hand, argued that it could not be futile since it is a 'benefit' just to be alive.

Levine: In the Wanglie case the people who were arguing for maintaining life support said to the physician experts, 'You're the same people who told us that if you took away the ventilator from Karen Ann Quinlan, she'd be dead within minutes and she lived for 10 more years without a ventilator.' She died in 1985.

Farley. Karen Quinlan lived in a vegetative state, in a fetal position. Today we would identify the question in this case as not only one of whether she should be taken off the ventilator, but also whether, when removed from the ventilator, she should be kept alive by means of artificial nutrition and hydration. Do either of these forms of life support make sense in this case? Or are both 'futile' because this patient receives no benefit from being kept alive?

Many people are afraid of genetically engineered foods. Why do you think that is?

Levine: We're talking about such things as corn that is resistant to being destroyed by corn borers. When you modify something about a plant that makes it good for one purpose, it may be bad for another purpose. We have bacteria now that can eat oil spills. What else can they do? Part of what we're interested in is developing criteria for allowing genetically altered foods out into the marketplace. We need sufficient time to understand the implications of some of these innovations.

Why has there been such strong opposition to genetically altered food in Europe?

Farley: You have smaller nations there so people know where their food is coming from. We don't know where most of our food is coming from. They also have farmers who need to continue to survive. One problem with genetically engineered seeds is that they may do good things, but they're also made so they won't keep re-seeding. You have to keep buying the seeds every year.

What about spraying pesticides to contain the West Nile virus. Is that ethical?

Levine. The argument has features in common with mandatory fluoridation of water and mandatory vaccination for diphtheria and small pox. Some people said, "I don't want that," and the state was able to prevail due to what the law calls a compelling state interest. Now we have a virus that attacks birds and people. Most of the people that get infected with it don't even know about it, and a small number of them die of it. Here is another question that is not only bringing bioethics, but environmental ethics, into the debate.

Why is it important to broaden and expand the debate about bioethical issues?

Levine: Human societies have been interested in matters of morality or ethics since before recorded history. Bioethics took a different turn in the United States in the 1960s than it might have had earlier because it was in the 1960s that we first noticed officially that we were a heterogeneous society. Before then it was as if there were a single voice that determined matters of right and wrong and what's moral and so on. And it was essentially a white male, upper middle class, Christian voice. In the 1960s we began to listen to other voices.

Watch future issues of the Yale Bulletin & Calendar for Information about activities sponsored by the Interdisciplinary Bioethics Project.

-- By Jacqueline Weaver


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