The Ethics of Ethical Advising: Confessions of an Ethical Advisor

[listen to audio]

by Karen Lebacqz

I want to share with you tonight some of the joys and frustrations of trying to be an 'ethics advisor' in both public and private settings. In the last 25 years I've had occasion to serve as an ethics 'consultant' or 'advisor' in several settings, including: (1) as a member of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research- a Commission set up by the U.S. Congress to develop guidelines for the use of human beings as research subjects in medicine; (2) as an employee of the Department of Health for the state of California, serving as ethical advisor to the then Director of Health, Dr. Jerome Lackner; and (3) most recently, as a member of the Ethics Advisory Board of the Geron Corporation in Menlo Park, which pioneered the groundbreaking work in human embryonic stem cell technology. Each of these settings has had its frustrations and joys. I've struggled over whether to share the joys first and then turn to the frustrations, or whether to share the frustrations first and then turn to the joys. In this post?Easter season, it seems appropriate to end with joy, so I begin with frustrations!

FRUSTRATIONS:

1. "A What?"
One of the frustrations that I've had in other settings, though not on the Geron EAB, is having people around me not have a clue as to what an ethicist is or does. When I worked as a consultant for the California State Department of Health, people would always come as ask me, "Can I do x, y, and z?" I would respond: "If you want to know whether you can do it, talk to a lawyer; if they say you can and you want to know whether you should, come back and talk to me. They never came back!" In short, in the early days, no one knew what ethics was or what an ethics advisor was supposed to do. That has not been a problem at Geron, where the corporation came to the Graduate Theological Union seeking ethics consultation and therefore had some idea of what ethicists might bring into the equation.

2. Confidentiality - and its opposite: "Sunshine Laws"
In the public arena of the National Commission, one of my frustrations was that everything we said and did was open to public scrutiny. All of our meetings were public and were rather well attended. Everything we said, therefore, was subject to being written down, mis-reported, mis-understood, and thrown back at us. I did receive some 'hate' mail during that time, as I tend to be rather outspoken. Not having an opportunity to mull things in private in order to get our ideas secured before exposing them to public view was frustrating.

In the private setting, the frustration is the opposite. Not being able to discuss publicly what I know is for me one of the biggest frustrations. Many times during the past several years I have been asked questions to which I knew the answers but on which confidentiality was required and I could not speak openly. Coming from an academic tradition of sharing knowledge, and coupling that with my own commitment to democratic principles of 'freedom of information,' I find it very frustrating and difficult not to be able to share with colleagues information that I know might make a difference to their own work. For example, Francoise Baylis is a leading Canadian bioethicist (and a critic of Geron and its EAB). In her testimony on stem cells to the National Bioethics Advisory Commission, Francoise argued that research might be permitted on 'non?viable' embryos but not on 'viable' embryos from in vitro fertilization. At that time, the EAB already knew that this simple dichotomy did not match IVF practices, but I did not feel that I could discuss that publicly, since the information had come to me through my consultation at Geron.

3. Time constraints
Ethics is a slow discipline. Not unlike cows who need to chew their cuds over and over, ethicists generally want to mull things over for a considerable time. By contrast, science — especially in the stem cell field — moves very fast. My colleague Laurie Zoloth once wrote that we are constantly running behind "panting to keep up." I do not agree completely with this assessment, but there is some truth in her observation. Most of the EAB were not trained scientifically. We often had to have things explained to us several times — or we would go home from one meeting thinking we understood and then discover at the next meeting that we had missed something important. By the time we got all the science under our belts and could turn to an ethical analysis, the science had changed. I felt a bit sometimes like Alice in Wonderland, wanting to beg that things wouldn't grow so big so fast! The constant and rapid change in the scientific fields often gave a bit of a sense of 'unreality' to our work. Recently, for example, we scrapped two years of hard work (an essay that we had hoped to publish and on which I had personally spent dozens if not hundreds of hours) because the science had changed so much by the time we got ready to publish our response that we considered our response outdated and irrelevant. Perhaps if we had been able to work full?time as consultants we would not have experienced this sense of time constraint and frustration; most of the time, consultation is a part?time job added onto an already full - or even over?full full?time job!. The National Commission had a staff and could give assignments to our staff in between meetings, and when I worked for the State Department of Health my job there was full?time, but my recent work consulting for Geron is part?time under circumstances where it is difficult to have the kind of reflective time that I would ideally like for my own work.

4. Problems in writing/publishing
I have already mentioned that the EAB recently scrapped one essay because of the rapid changes in the science. Not having a scientific advisor assigned to write for us created problems in our process. We would try to write our understanding of the science, and it would be found woefully inadequate ("impeccable ignorance," as one of my former colleagues used to say with a withering glance!). As our analysis needed to be linked to the science, writing anything has been difficult because of our lack of knowledge of the science. Knowing how to 'pitch' what we wrote was also difficult: should we aim for the general public (the Hastings Center Report audience, e.g.) or for a scientific audience (the readership of the New England Journal of Medicine, for example) who would not necessarily be conversant with some ethical concepts? As ethicists, we want to say something important in our own field, but the technicalities of our field may not be what is important from the perspective of the audience of our work.

5. Fortitude
(A) The EAB has sometimes been directly attacked in circumstances where there is either no forum for response or where response would not be appropriate. Because we are NOT a public organization but a consulting group 'hired' to offer advice to Geron, there have been times when others would misrepresent our work in public places but we had no obvious public forum from which to respond, nor would it have been appropriate to spend our time responding to an attack on us rather than doing the work for which we are hired as consultants. Keeping a steady course has required that wonderful virtue of fortitude!

(B) Even where we are not directly attacked, implied criticism is a constant companion. For example, our integrity is almost always impugned in public settings. We are constantly considered to be 'compromised' as academicians. I find it fascinating that I am always asked whether I am paid. Of course we were paid! "My love is free; my time isn't." I'm being paid to be here tonight at Santa Clara. Does the fact that I am being paid mean that I will not be honest — e.g. that I will take a "Roman Catholic" line because I'm speaking in an institution with strong historic ties to the Roman Catholic church? — no! So why would anybody assume that I couldn't or wouldn't speak freely to the CEO of Geron just because I'm paid for my time?! (Ironically, in the beginning we kept our honorarium ridiculously low precisely so that no one could accuse us of being paid for our opinions; once we realized that it didn't make any difference, we asked for a raise!) We have also given some time free to the corporation, just as I donate considerable time to my local hospital (serving on its ethics committee and as a volunteer chaplain) and to my local church (where I have become by default the choir director and, because of my ordained status, the substitute pastor for doing weddings, serving communion, and so on). So some of the work we do is paid; some is not. One of the frustrations, however, is the presumption that getting paid in the private sector will somehow skew one's judgment in a way that getting paid by a public institution (I have also worked as a consultant to the California State Department of Health and have served on the National Commission for the Protection of Human Subjects) does not.

6. Compromise
Collaborative decision?making with colleagues who are very different does sometimes require difficult compromises.

(A) When the National Commission was established, we were given only four months in which to promulgate guidelines for the use of the human fetus in research. We didn't even speak the same language! (We all spoke English, but some of us spoke science and some spoke ethics, and some spoke law, and others didn't understand any of those 'languages.') It took us the full four months to begin to understand each other. I still remember the day when one of the members of the Commission, in utter frustration, said, "You keep talking about a morally relevant difference. I don't know what you mean by that term." So, of course, we commissioned an ethics consultant to write a background paper explaining what the term morally relevant means!

(B) Although I love my colleagues with whom I work on the Geron EAB, it has been my conviction for some time that we are too narrow a group and that we desperately need to include additional perspectives — e.g. Buddhist views. I have argued long and hard for this but have not (yet) been able to convince my colleagues, and therefore I have had to decide whether to remain on a board that I believe needs changes in membership or whether to withdraw. My compromise here has been to remain and to keep bringing up the issue.

(C) In the first piece published by the EAB (in the Hastings Center Report), we noted that a "developmental" view is a widely accepted view of the human embryo and that therefore "respect" for an embryo might require something different at different times in embryonic development. I can affirm all of this, but it does not match my own personal view, which is much closer in some ways to a classical Roman Catholic view: I believe that an embryo is fully deserving of respect during its entire development, and therefore I use the "developmental" view a bit differently than do those who believe that respect becomes relevant only at certain stages of development. So all of us on the EAB take a "developmental view" of the human embryo, but we don't all mean the same thing by that term. We had to compromise in order to get anything written. But once that compromise is on paper, I am forced to live with it even if I do not agree with it! I am responsible for the document, and I sometimes find myself defending positions that do not match my own most deeply felt convictions.

(D) On some occasions, it is hard to know when to compromise. Several years ago, Geron entered into a six?year agreement with the Roslin Institute in Scotland. As the Roslin Institute was best known for Dolly the cloned sheep, the EAB decided that we had better spend time thinking about ethical issues around somatic cell nuclear transfer. One of my colleagues felt strongly that any human organism created by SCNT should not be called an embryo. That colleague preferred to reserve the term embryo for human organisms created by sexual reproduction. I disagree. Personally, I believe that an organism created by SCNT is indeed an embryo. But rather than get stuck debating the term until forever and risk never getting around to discussing the remaining (and serious) ethical issues around SCNT, I chose to grit my teeth and accept - at least as a working hypothesis - the term fabricant.

7. Saying something significant
The National Commission for the Protection of Human Subjects spoiled me. It was a great group of people, and it was meaningful work. Further, I felt — and continue to feel — that we broke new ground. While Beauchamp and Childress were concurrently developing their understanding of ethical principles to undergird bioethics, the National Commission did a great deal to give voice to these principles. Indeed, our "Belmont" Report is a report about the principles themselves and I believe demonstrates that we were breaking new ground. Further, the recommendations of the Commission were turned into rules and regulations for human research that still are operative in large part today. So the work felt important and has had lasting legacy, both in terms of its concrete impact on medical and scientific practice and also in terms of its contributions to the ethics literature and conceptualization of ethical issues.

Can I say the same thing of my work in the State Department of Health or of the Geron EAB? Has the EAB broken new ethical ground? Have our pronouncements and our ongoing advice to the CEO of Geron been ethically sound and important? I'm not sure. I think the CEO of Geron had great expectations of us and was often disappointed at how much the field of ethics works by small incremental advances rather than by great big breakthroughs that change the way everyone thinks. In order to communicate well to the outside world, the EAB sometimes framed our work in the language of the four principles that have become rather enshrined through the work of Tom Beauchamp and James Childress. Our reliance on well?trodden ethical ground, however, caused Dr. Okarma, the CEO of Geron, to question whether we had done anything new or were offering any ethical breakthroughs. In general, I do not believe that 'ethics by committee' is likely to break stunning new ground, but I do believe that working with colleagues will clarify and challenge our own presuppositions, so that each person may in fact end up thinking new thoughts, even if those appear only as small increments on paper.

8. De-railing other work!
At the point where I joined the EAB of Geron, I had just begun a major project in professional ethics for clergy. Right after I joined the EAB (and became its first chair), the discovery of human embryonic stem cells was announced. For the next 2 years, I found it difficult to do anything other than stem cells. I still have in the back of my mind a book on professional ethics that I would still like to write, but at present it is not written! Most consulting work would not be so dramatic. However, I can also say that when I served on the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, for those four years I did little else and all of my writing was connected to the work of the Commission. So other projects lie fallow. Recently I discovered a little known song of Judy Collins, the first line of which is, "I have learned to love the fallow way," and that has become my temporary theme song!

JOYS:

So — being publicly attacked, working hard on things that don't always come to fruition, being either too secretive or not secretive enough — these are the kinds of things that I would say are among the frustrations of ethics advising. Why, then, do we do it? What are the rewards, or joys?

1. Making a difference
Academic life in general doesn't give one a sense of very concrete impact on the world. We like to think that our students will think better or know more when they leave us than when they began, and sometimes we see very real concrete growth though I often think it comes in small increments. By contrast, ethics consultation can — though I admit it doesn't always — result in very concrete impact. For example, one can be directly instrumental in either stopping research or giving a 'green light' to important research.

(A) Stopping Research:. At one point, the EAB raised serious questions about a piece of research that Geron was considering supporting. We did not say, "We disapprove of this research," nor did we directly request that the corporation not sponsor the research. However, the CEO heard our concerns, and the corporation backed off from that research. So we did feel that our ethical instincts were honored and our perspectives mattered. Was the proposed research unethical? I don't think so, but it bordered on interventions that would be troubling to many people and therefore I think it was wise not to proceed. Certainly, when the National Commission was doing its work, a great deal of research was done on prisoners, and much of that work came to a halt. (The prisoners would not always thank us for that - they often liked participating in the research programs, because they were treated better on the research units than on the regular wards. That is precisely why we thought the research should not go on, but our stopping of research would not have been popular with all the prisoners we interviewed.)

(B) Supporting Research: As important as stopping research is, I would also say that supporting research is equally important. I do not expect everyone to agree with me that stem cell research is important or should be approved, but that is my own judgment, and it has been for me important and joyful to be in a position to give support for this research, both in the private arena and in public settings. Unfortunately, in my view, the stem cell research program has been badly crippled at the public level and, in the current economic situation, private funding has also diminished. One of my struggles is whether I have done enough to be supportive publicly of this research.

2. Working closely with colleagues over time
While some consultants work as individuals — and I have done this as well — most of my consultation has involved working with a group of consultants. This kind of collaborative work has enormous possibilities for growth and learning. On the Geron board, we are five VERY diverse people: one orthodox Jew, one Roman Catholic, one Lutheran, one secular ethicist, and I would call myself a Protestant from the Reformed tradition. We rarely agree with each other! As noted above, we have had to find ways to compromise. After a year or more of working together, we could probably predict what each of us would say when a new issue came up, so perhaps there were fewer surprises. Still, learning to compromise around our differences was important and exciting. Learning to respect opinions with which we disagree has also been challenging and growth?producing. Learning to trust colleagues to speak for us has probably been the hardest, but overall it has been a joy to work with this diverse group of people. My trust, respect, and even love for these colleagues has kept me going at times when the long commute from Mendocino to Palo Alto seemed too daunting.

Similarly, when I worked on the National Commission, I developed great respect for people from very different backgrounds and training. One of my best colleagues on that Commission was Patricia King, an African-American lawyer from Washington, D.C. I was always envious of Pat King — she was one of those unbelievably beautiful women who could don her Levis and throw a scarf around her head and look like she stepped out of the pages of Vogue magazine. Quite frankly, I did not expect to become such close colleagues with her. But we found, as time went by, that our hands would go up at the same time during a meeting and that we were almost always just about to say the exact same thing, so we took to taking turns when called upon, often inviting the other to have our speaking time!

3. Being on the 'inside' of scientific developments
Generally speaking, the EAB probably has known more about what was happening with stem cell research than has any other group of non?scientists or any group of scientists who are not directly involved in this research. I'm not generally a believer in secret societies or occult knowledge that is not readily available to all, but it is exciting to be on the forefront of the development of knowledge. Crucial to my own discipline is the gift of prophecy — of being able to read what Catholics call 'the signs of the times' and look through those to discern what the future might bring. Being on the forefront of the development of knowledge permits one to exercise this gift — to think ahead and get ready for important new social changes. Do we stand on the brink of a new form of medicine, as some have claimed? Are we entering the era of "regenerative" medicine? Possibly. If we are, those of us who have had the privilege (and it really is a privilege) of knowing what the future shape of that medicine might look like really have been given a gift. Of course, in my theology, gifts bring responsibility, so there are obligations that come with knowledge.

4. Public influence
For obvious reasons, my service on the National Commission stands for me as the time when I had the most public influence. As I noted above, the rules and regulations for human research printed in the Federal Register still bear the imprint of the National Commission. I am proud of this work and of the legacy that it has left. It is partly because of the opportunity to have such public influence that I would undertake consulting work again.

Because of our distinctive role at Geron, members of the EAB have been invited to speak publicly on many occasions about the ethics of stem cell research. Several of us testified before the National Bioethics Advisory Commission and before the American Academy for the Advancement of Science. Although we were hired as private consultants, therefore, we had the sense that we might influence not simply the work of one corporation but of public agencies and public opinion. Further, having the ear of the CEO of an important biotech corporation has given us the sense that our work might have a "spreading" effect to other biotech corporations.

All these, then, are among the joys of this work: making a concrete difference to the course of research; having some public influence, working with a great group of colleagues; and having the gift of knowledge from which prophecy might arise.

These remarks by Karen Lebacqz, professor of theological ethics at Pacific School of Religion, were delivered at the Markkula Center for Applied Ethics May 14, 2003. Lebacqz has served on the National Commission for the Protection of Human Subjects; as a consultant to the director of health for the state of California; as a member of the ELSI-based Genome Project at the Graduate Theological Union's Center for Theology and Natural Sciences; and as a member of the Ethics Advisory Board of Geron Corp, a biotechnology company. Her talk was supported in part by a gift from New York Life Insurance Company in honor of William Regan III.