The news cycle is loud, but we need to hear those who can’t shout
Leon Kass did not appoint himself shepherd of the rocky hills of modern-day bioethics. He set out with a one-year leave of absence from his biomedical research at the National Institutes of Health to explore bioethics 35 years ago. The young physician-scientist never made it back to the lab.
Instead, his thoughts and writings about the nature of human dignity became guideposts for a nation struggling to answer the question: What does it mean to be human?
Mr. Kass' most famous bioethical encounter happened in the summer of 2001, when President George W. Bush met with him to discuss embryonic stem-cell research. Shortly after that conversation Mr. Bush announced his decision to open federal funding to embryonic stem-cell research, but only on stem-cell lines that already existed. He also announced the formation of a President's Council on Bioethics, which Mr. Kass would lead.
Mr. Kass stepped down as chairman of the council last summer but remains an active member. He is a professor at the University of Chicago and a fellow at the American Enterprise Institute. As he surveys past and future bioethics crises, Mr. Kass, who is Jewish and an avid scholar of the book of Genesis, finds himself still on the search to pin down the definition of humanness.
WORLD Partly thanks to media reports on bioethics, more and more lay people are taking time to think and talk about things like human dignity and the beginning and end of life. What is the scholarly bioethicist's role in this public discourse?
KASS One of things [the President's Council on Bioethics] tried very hard to do was not to take an academic view of the subject. Our reports are not simply "easy reading," but we didn't use any jargon. We tried to use language used by lay persons. We don't think this is a subject for experts. Everybody's life is affected by these technologies, and if we are going to govern ourselves in this area, it means citizens have to become knowledgeable, and their representatives have to become thoughtful.
There are many things in some of [the council's reports] that actually would be helpful to the individual and families discussing these things at home. The media . . . are not necessarily the best avenue into this.
WORLD When have you seen the media misguide the public on bioethics?
KASS The [Terri] Schiavo case got a lot of attention, but it would never have become an issue were it not because of what was largely a family argument. Most cases about end-of-life care with severely disabled people are not like the Schiavo case. And such cases involve more than questions about when do you pull the plug. It's about putting people into institutions, taking away someone's driving privilege. How do you care on an everyday basis for people who have lost the ability to care for themselves? First of all, caregivers need to know that they're not alone in this, and second, there are some rough rules of thumb.
WORLD What values inform your own approach to bioethics?
KASS It would be hard to trace the roots of my own thinking on this. They are partly informed by my experience as a physician, though I did not practice for very long. They are partly informed by certain Judeo-Christian teachings about the preciousness of the human being. Academic bioethics is very good in thinking about personal autonomy and very bad about thinking about the meaning of the fact that we have bodies, that we have loves and hates, that we are connected to other human beings in deep and profound ways. In my own sense, I think respect for the highest human possibilities means also respect for everything about human life, not just reason and will but also passion, desires.
I know there are disagreements among academic bioethicists about when life begins, what respect is owed to the early embryo or fetus, and about legalization of assisted suicide and euthanasia. But I think we would be in grave difficulty if we treat the earliest stages of human life as just tissue or as natural resources to be exploited for our benefit. I'm an agnostic on the question of whether an early human embryo is the moral equivalent of my grandchildren. I simply don't know. I'm disinclined to say yes. On the other hand, I don't want to treat an embryo less well than it might deserve. Since I don't know where the boundary exists that would turn something less than human into something fully human, I'm going to err on side of life and be respectful.
WORLD What do you think about the cloning of embryos for use in stem-cell research?
KASS Leaving aside the embryo question, I think the claims for so-called "therapeutic cloning" are vastly overrated. I don't think we need this research to do what the scientists want to do, and I don't think it holds out the promise of this rejection-proof tissue transplantation. I don't believe that for a minute. I think there are alternate ways of getting exactly the same kind of genetically controlled stem cells. None of the major biotech companies in this country-none of them-are putting their money behind therapeutic cloning.
WORLD What did you learn during your tenure as chairman of the President's Council on Bioethics about the government's role in regulating biotechnology?
KASS There is no simple answer. The benefits of medical science and biotechnology, especially those related to treating disease and improving nutrition, are a good thing, and we don't want to kill the goose that lays the golden egg. In a very, very small number of areas, cloning being one, I think we should erect legal barriers to practices that would degrade human beings. I also think we should oppose assisted suicide and euthanasia.
Short of things like that, I do not favor the blunt instrument of legal prohibition. I favor guidelines and regulatory practices that would try to distinguish between more innocent and less innocent uses of these technologies-keeping the benefits and minimizing the harms.
But getting such regulation will be difficult. Scientists and the biotech industry do not want it. Some pro-life groups have opposed government's having any involvement in this area at all. So there is a political difficulty in getting past what is largely a system of anarchy.
WORLD You have written a commentary on the book of Genesis in which you talk about how studying it over the years has influenced your thinking about human life. Can you cite any other parts of the Bible or meaningful texts that have had a similar influence?
KASS I'm not aware of how a particular theological view is responsible for what I have to say when I write about bioethical topics. To be certain, it's probably in there, but I don't feel myself writing on these topics, for example, as a Jew. I feel myself writing as a thoughtful human being, taking help from the best that has been thought and written, and I will gladly take help from wherever I can get it.
WORLD Now that you have stepped down as chairman of the President's Council on Bioethics, where will you focus your attention next?
KASS At the moment, I'd like to follow up on ethical caregiving in our aging society and the crisis with long-term care that is virtually here. That, I think, is a very large and important ethical and social question: How are we going to care for the increasing number of people-hundreds of thousands-who can no longer care for themselves? And [how do we] find the right course between not abandoning them on the one hand, but also not torturing them with every conceivable technology that would extend their life in burdensome ways?
I'm also interested in trying to help to develop a clearer understanding of the idea of human dignity that we need to defend in this age of biotechnology. The council has talked about human dignity, but we have yet to make a clear enough case as to what that consists of, how it is threatened, and what we have to do to defend it.