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Friday, January 18, 2002

Session 7: Public Comments
CHAIRMAN KASS: Why do not we begin? We have in this last session of this first meeting the opportunity for public comment, and I think I will— We have asked people to sign up who would like to speak, and I do not want to keep them waiting longer than we already have.

I think I will forego an attempt to summarize that discussion, except to point out that it is perfectly clear that there are— This is not an argument between morality and immorality, but an argument between powerfully competing goods, and the question is whether one can find— And to add further, it is unlikely, perhaps we can work for it, that we can find a position in which something is not sacrificed to something else. And there are probably people who are simply constitutionally unwilling to make any sacrifices on things that are of profound importance to them. We will find out as we go along.

I am certainly not unhappy to see develop the most powerful statements on the legislative alternatives, just as I am on the ethical argumentation, and Council members are invited on the matter of the legal issues to be submitting things, and we will circulate. And it is my hope that we will be able to—that we will all read the scientific information prepared by the Academy, use that as a point of departure, not as the whole story by any means, but they have done an exhaustive study, and we would do very, very well to inform ourselves with the help of that report, and at least be as clear as we can be given the uncertainties of the future about what the promise of that research is. That will not settle absolutely the moral question, or the policy question, for at least some people in the room, but it behooves us to be well-informed, as well-informed on that as we can be, and I trust that that is acceptable.

We have, if my list is correct, a list of either seven or eight people who have asked to speak. I think the custom at the National Bioethics Advisory Commission was that people would be given five minutes each, and I will try to hold you to that in the interest of making time for everyone who would like to. I believe the microphone for use is behind the end of the table, and if I could ask my colleagues at the end of the table as a courtesy to our speakers to turn around.

Also, I would like to ask people who have cell phones in the room to please turn them off. There have been several people who found them disconcerting. This is not a Luddite argument, but a matter of courtesy.

The first member of the public— And by the way, let me say in general that I think I am speaking for all of us, that I regard these public parts of the meeting not as an onerous burden that law requires, but as an opportunity for members of this Council to hear from our fellow citizens whose thoughts are at least as relevant as our own. So, we look forward to hearing from everyone. What you say will figure in our deliberations, and strong statements are, of course, welcome because people have strong views, but I am going to insist on civility.

The first statement is from John Wertman, Consortium of Social Sciences Association, if my information is correct. Is Mr. Wertman here? Mr. Wertman? I will return and see if he might—

Father Joseph Howard of the American Bioethics Advisory Board. Is Father Howard here? Thank you.

PRESENTATION BY FATHER JOHN HOWARD

FR. HOWARD: Dr. Kass and distinguished members and scholars of the Presidential Bioethics Council, I am Father Joseph Howard. I serve as Executive Director of the American Bioethics Advisory Commission, a division of American Life League in Stafford, Virginia. Our commission was formed at the same time the former Clinton Bioethics Commission was formed, and consists of 21 distinguished scholars, men and women, scattered throughout the nation, including two professor emeriti of human embryology.

The view of our commission on what constitutes bioethics is that bioethics involves analysis of biomedical, technological issues such as abortion, physician-assisted suicide, cloning, gene therapy, adult and human embryonic stem cell research, and in our view it should provide both a valid, accurate scientific as well as moral analysis in accord with a respect for the absolute dignity of the human person from fertilization until natural death. These issues, as you are well aware, are very critical and cutting-edge. For example, just recently it was reported in an eminent scientific journal that a patient in a gene therapy trial had the virus used to transfer the gene show up in his semen, indeed profound implications involving germ cell lines.

On the issues of human cloning, we have great concerns as I am sure each of you do, not only involving somatic cell nuclear transfer, but also parthenogenesis, the experiments recently reported by Advanced Cell Technology, blastomere splitting, and de-individuation. Our position, again, is a clear one of banning all types of human cloning, both reproductive and therapeutic.

It is the goal of the American Bioethics Advisory Commission that over time we would hope to collaborate with your Bioethics Council, and I look forward to the members of our distinguished commission as well as myself getting to meet each of you, and hopefully, working with you in some capacity.

Thank you.

CHAIRMAN KASS: Thank you very much, Father Howard.

Next on my list is Richard Doerflinger of the National Catholic Conference of Bishops.

PRESENTATION BY MR. RICHARD DOERFLINGER

MR. DOERFLINGER: Thank you, Mr. Chairman. Actually, our name was changed recently to U.S. Conference of Catholic Bishops. We decided to recognize there are actually other national bishops conferences in the world, and so adapted our name accordingly.

I am grateful for the opportunity to address this Council. I want to start by saying I am a little bemused that some apologists for the biotechnology industry have announced before a word was uttered that this panel is stacked. This is the sixth such government advisory panel I have addressed in my 20 years of representing the Catholic Bishops Conference on these issues. It is actually the first such panel whose conclusions I could not predict by looking at the list of members.

At the first meeting of the NIH Human Embryo Research Panel in 1994, the chairman announced at the first meeting that if any member opposed federal funding of human embryo research, he or she should leave the room and not come back. That was a government panel the Washington Post did not criticize for being stacked. We all have our own explanations as to why.

At any rate, because I do see this panel as having an open mind on the issue, I want to suggest that one of its most important tasks may be just to provide us with the language, or the way of speaking, that will clarify rather than conceal the realities of the cloning issue. I think too many slogans have been used in the debate to obfuscate and to hide reality, and I think a primary example is the sentence "I am against reproductive cloning, but for therapeutic cloning." I think in most people's minds this conjures up a mental image of two completely different procedures, one producing live babies, or even adults, a la Michael Keaton in the movie Multiplicity, the other producing therapeutic research material. Some groups have now decided to avoid the word "cloning" altogether when referring to what it wants to protect calling it, for example, "nuclear transplantation". This is scientific nonsense, of course. Human cloning proceeds by nuclear transplantation regardless of what someone may intend for the clone in the future.

The biological reality is that all cloning of multi-celled animals, including man, occurs at the embryonic stage. All human cloning is embryo cloning. Once the cloning procedure has been done, a new organism genetically similar to the donor of the body cell has arisen. We may have disagreements about the moral status of that organism, but we should not deny that human cloning, a key event in a form of asexual reproduction, has already taken place. Moreover, at this point, as some have already said, there is no therapeutic indication for human cloning, and as documented in the printed material we have provided to the Council, there may never be.

If we could agree that—if we can agree, and that is not settled either, that human cloning should not be allowed, the question is not which cloning should we ban. It seems to me the question is best put as should we ban the use of the cloning procedure in humans, or should we ban what amounts to the normal and ordinary process of allowing a human embryo to survive in a womb when that embryo came from cloning. A ban solely on reproductive cloning is not in our view a ban on cloning, but a ban on gestation and birth. Instead of banning the creation of the cloned organism, it bans its later survival. On further reflection, this is an odd proposal. It is as if a slave owner in the antebellum South had forced abortions on all his female slaves, and announced that in one generation he had banned slavery.

Many experts, some of whom are on this Council, have persuasively, I think, argued that such a ban would be ineffective, even at preventing cloning for live birth. While it will take months of experimentation to produce cloned embryos that could be expected to survive in a womb, once that is achieved it would literally take seconds to transfer those embryos to wombs. The woman could do it herself. And once that is done, the only way to enforce a ban on live born clones is, presumably, to imprison the woman and coerce an abortion.

But the moral problem about such a ban, I think, is equally important to recognize, for such a proposal would effectively have the government mandating the destruction of a class of humans at the embryonic stage. We would define a class of developing human organisms it is a crime not to kill.

This week, a Washington Post article, the same article that spoke of this panel in the same breath as the Taliban, said that in the view of some experts, if Congress decides to ban all human cloning out of respect for the embryo, it will be imposing a particular fundamentalist view on public policy. That is ridiculous in my view, for members of Congress with widely differing views on the embryo have already voted for a complete ban on human cloning.

One can cast such a vote both because it is a more effective ban, and because one recognizes that the embryo deserves some recognition and some respect, that Americans should not be required to treat the embryo as toxic waste to be discarded upon government mandate in our zeal to ban human cloning. It is the agenda of "ban reproductive cloning only" that in the end, I believe, requires us to hold just one narrow view of the embryo, the view that the embryo is garbage. Or that he or she is to be hunted down and destroyed as Public Enemy Number One. No clones left alive, therefore no cloning. I doubt that anyone could create a fire wall to prevent that attitude of contempt from affecting our dealings with older humans who may arise from such procedures in the future.

In conclusion, I believe we should work to stop great evils, but also ensure we do not create even greater evils in the process. It is important to ban human cloning, and equally important to do so in a morally and legally responsible way. In short, we should not resolve this issue by blaming and penalizing the helpless victim of the process, at whatever stage of development. We should ban cloning by forbidding people to make a clone, not by forbidding them to be a clone.

Thank you.

CHAIRMAN KASS: Thank you very much. The next person on my list is Elisabeth Breese Brittin from the Parkinson's Action Network and CAMR. Thank you very much.

PRESENTATION BY MS. ELISABETH BREESE BRITTIN

MS. BRITTIN: Thank you. Thank you, Dr. Kass, and thank you to all the members of the commission.

My name is Elisabeth Breese Brittin. I am here both as the Executive Director of the Parkinson's Action Network, and as a board member of the Coalition for the Advancement of Medical Research. The Coalition represents 60 different national organizations including patient advocacy groups, a number of universities, and scientists and scientific organizations.

First, I just want to say on behalf of both of those groups, we want to thank this distinguished panel for your time in coming to consider these very difficult and very important issues. We are concerned, however, that there are no patient representatives on the commission, and just want to urge you to keep the patients in mind as you go about the work that you are doing.

One of the things that we think is important for you all to consider is the fact that time is not neutral for people who suffer from these diseases, for people who have Parkinson's, or ALS, or Alzheimer's. Every day they get worse, and they are degenerating. And although these are issues that have to be considered very carefully, and there are a lot of concerns, a lot of things that need to be debated and discussed, and we certainly do not want to short-circuit that, we want you to keep that in mind, that these are folks that are struggling and suffering with these diseases every day. In fact, the two organizations that I am here on behalf of represent literally millions of Americans who suffer from a wide variety of diseases.

One of the things that has been expressed during the meeting in the last couple of days and I have heard often is the fact that there has been so much hype about the promise of stem cell research, or therapeutic cloning, that folks think that these cures are around the corner, and that we have built expectations that cannot be fulfilled. And I just want to say as somebody who speaks to people with Parkinson's every day, that I actually do not think that is true. I think that people recognize that there is a long way down the road from doing studies on mice to doing actual—going to their neurologist and having this be a treatment that is available to them.

But I can tell you that my father was diagnosed with Parkinson's disease before I was born, and died my first year in college. And I have an uncle who died from Parkinson's disease just three months ago. So, this is not something that is going to save my loved ones, but if another generation does not have to go through what my family went through, I think that is a huge blessing, and I think that what we really want is the scientists to be able to go forward with this research, to be able to see where it leads, to see if, in fact, it does offer the hope that we have talked about. And what we want to do is have that go forward, and not slow it down unnecessarily, and let them do their work. And I can tell you from talking to the patients and the scientists, they are perplexed. They do not understand why they cannot see where it leads, and see if in fact this is the promise that would change so many lives and offer so much hope to people all around the world.

So, thank you very much.

CHAIRMAN KASS: Thank you very much.

This next might be a mistake on the sign up sheet, but my list with a question mark has a Travis Earle. Is Mr. Earle here?

MR.EARLE: I did not sign up.

CHAIRMAN KASS: You signed in, but I think on the— Okay. Clear. Next is a Kevin Allman from the AAAS. Is Mr. Allman here? That might also have been a sign up attendance rather than a desire to speak. Sean Tipton, the American Society of Reproductive Medicine.

PRESENTATION BY MR. SEAN TIPTON

MR. TIPTON: Thank you. I, too, want to thank all of you individually for your service on this commission, and for the opportunity to address you today. I am Sean Tipton. I am the Director of Public Affairs with the American Society for Reproductive Medicine.

The American Society for Reproductive Medicine is pleased that President Bush has recognized the need to examine the ethical implications of the rapid advances in the biological and medical sciences. It can be difficult to determine where all the new biotechnologies are leading us, but it is important to try.

The field of reproductive medicine in particular has been advancing at a very impressive pace despite the lack of federal funding for much of the research. For some, these advances raise questions about the nature of personhood, parenthood, and even life itself. Every day ASRM members grapple with these bioethical questions in the real world as they counsel their patients on the best medical treatments for them. Our doctors are called upon to discuss with their patients the ways their choice of treatment will work within the patient's own system of ethics and beliefs. It is crucial that the voice of the patient be heard as this commission goes about its work. Working in a pluralistic society, it is important that all points of view be heard from.

Since its founding in 1944, the ASRM has been dedicated to promoting applied and basic research, and the highest standards of patient care. To help guide us in this effort, ASRM early on established an ethics committee. Its present members include medical doctors and researchers as well as professors of law, ethics, political science, and clinical social work, and one member of your Council.

Our ethics committee has done reports on a variety of topics including cloning, the use of embryos for research, and the use of donated gametes. We will be happy to make these reports available to you as well as the committee that authored them.

ASRM is opposed to any attempts at human cloning. However, the knowledge we may gain from further research into early human development by studying the human embryo, eggs, embryonic stem cells, and therapeutic cloning is too important to ignore. Studies in these areas may be essential to the development of new techniques in regenerative medicine, a field that holds the promise of using a patient's own genetic material to cure their disease. Such research must continue, preferably with the support and oversight of the federal government.

ASRM's leadership and its ethics committee are committed to working with the President's Council on Bioethics, and are looking forward to providing whatever assistance we can on scientific, medical, and ethical issues.

CHAIRMAN KASS: Thank you. And Mr. Tipton, we would be very happy to have copies of those reports. We will see that the members get them. Thank you.

Next, Bill Saunders from the FRC, the Family Research Council.

PRESENTATION BY MR. BILL SAUNDERS

MR. SAUNDERS: Thank you. The Family Research Council welcomes the appointment of this President's Council on Bioethics and such a distinguished group. We feel that it is a critical moment in the history of this country, and that members of this Council have a great opportunity to help the American people to think about very important issues. Some of these technological and scientific changes come so quickly that we move forward before we have had time to reflect. So, I welcome your deliberations as I have heard today and yesterday, thoughtful, serious wrestling with the issues.

I encourage you to take your meetings, if you can, outside the Beltway to cities around the country, because I believe it is at this moment that we need to reach the American people so that they stop and think about things. They need to carefully consider them. You have the opportunity to do that, and I think if you went to other cities, Indianapolis, Tacoma, Washington, wherever, you could reach people, you could engage people in thinking about issues that will determine their future.

So, we welcome the appointment of the Council, and we wish you well. Thank you.

CHAIRMAN KASS: Thank you very much.

I will go back. John Wertman? Is Mr. Wertman in the room? Is there anyone else who would like to make a public comment and whose name we do not have? All right.


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