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The Ethics of Ethical Advising: Confessions of an Ethical Advisor
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!
1. "A What?"
2. Confidentiality - and its opposite: "Sunshine Laws"
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
4. Problems in writing/publishing
(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.
(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
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!
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
(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
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
4. Public influence
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.