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Friday, July 12, 2002

Session 7: Public Comments.

CHAIRMAN KASS: Thank you very much.

If we run over, and we've already run into the time that was allotted for the public session, I have four names of people who have asked to speak, and if Council is willing, rather than take a break, if we would allow people to come forward and speak.

As everybody understands, people have up to five minutes for their comments. We have a microphone in the front, and I'd like to first call on Paul Tibbits from the American Diabetes Association.

Is Mr. Tibbits here? Please, come forward.

MR. TIBBITS: Chairman Kass and members of the President's Council on Bioethics, thank you very much for giving the American Diabetes Association the opportunity to testify regarding this very important issue.

My name is Paul Tibbits, and I am honored to represent the association today. I am not a scientist, nor am I an ethicist. I do bring one important element to the discussion. I've had diabetes for 22 years, since I was six years old.

As a person with diabetes, I am very proud to have the association speak on my behalf as well.

The association sincerely appreciates the Council's deliberation, but we cannot support the recommendation that was issued yesterday. In fact, we are extremely disheartened that the Council has proposed to close off this avenue of research that holds so much hope for people with diabetes.

Diabetes is a serious disease, killing more than 200,000 people every year. In the five minutes that I will spend testifying, four people will die from it. In the two days that you have been here, 2,400 people have died from it.

For many of the 17 million American living with diabetes, the complications of this disease are already destroying their bodies. It is a leading cause of heart disease and stroke, as well as the leading cause of blindness, kidney disease, and non-traumatic amputations.

This past April, the association issued a strong statement in support of therapeutic of cloning research. Like you, the association was careful and deliberate in its appropriate to this controversial issue, understanding the ethical and moral dilemmas surrounding this issue.

The board ultimately decided that the potential benefits of therapeutic cloning to millions of Americans with diabetes were too great to ignore.

As it became apparent that we risked losing this potential opportunity, we found ourselves in the position of strongly supporting the Human Cloning Prohibition Act of 2002 proposed by Senator Specter, Feinstein, Hatch and Kennedy, which would allow for the continuation of therapeutic cloning research.

The association affirms this position strongly because this country is running the risk of driving important research overseas and placing critical breakthroughs outside of the reach of millions of Americans.

Therapeutic cloning can be used in a number of ways to help people with diabetes if found to be successful. It can create replacement islet cells that can produce insulin. It can be used to create replacement tissue that would allow organs, such as the pancreas to once again function normally.

The powerful advantage of these newly created cells is that they may eliminate the need for immunosuppressive therapy, a harsh and destructive regimen that is currently necessary with islet cell replacement therapy.

Additionally, therapeutic cloning can improve the scientific understanding of how stem cells develop, thus speeding the search for new treatments and new cures for diabetes and other chronic diseases.

The association believes that a moratorium is simply the practical equivalent of a ban. First of all, a moratorium will put potential medical breakthroughs on hold. Many of the patients suffering from diabetes do not have time to add four years to the already lengthy research process. For them such a delay simply means an earlier death.

A moratorium also sends a wrong signal to scientists and researchers across the country. It will force some scientists to leave the country to pursue this research. It will force others into other avenues of research, essentially bringing such research to a grinding halt in America.

This will make it extremely difficult to restart this whole process once the moratorium does expire.

We have had a history of proposed moratoria in the past, such as for recombinant DNA in the 1970s. Instead of placing moratorium, however, the NIH and the FDA established regulatory bodies to regulate such research.

As a result of these bodies and this research, a laundry list of life saving products was created, including human insulin that helped people like me better regulate their disease.

A similar solution, one proposed in Proposal 2 by this Council, would be the best method for dealing with therapeutic cloning research. It should be allowed to continue, but the appropriate federal agencies should be given the authority to regulate such research within a very strong ethical framework.

This would be the best way of addressing both the ethical and moral concerns, combined with the need to save and approve the lives of millions of Americans.

Many prominent individuals support this position, including Presidents Ford, former Presidents Ford and Carter, as well as 40 Nobel Laureates.

I would like to thank you again for this opportunity to testify. This is a critically important issue for millions of Americans with Diabetes, but also for those with a number of other diseases conditions, including cancer, birth defects, Parkinson's disease, Alzheimer's disease, heart disease, stroke, arthritis, spinal cord injury.

The association would also like to extend an offer to assist the council or the President on this matter as additional deliberations are undertake. Please do not hesitate to call upon us as our country continues to consider this critical topic.

And if you will permit me to, I would like to take a moment to speak as an individual with diabetes as opposed to merely representative of the American Diabetes Association.

I wholeheartedly support there be cloning research for many of the reasons I just outlined. What I'm going to do with the following comments is focus on my personal view of this moratorium as an individual with diabetes.

I think it's a so-called moratorium, so-called because it's simply a ban with a semantic alteration. As I listened to some comments from the Council yesterday, I heard three distinct reasons that were used to defend the moratorium. The first was to gain additional time to convince other people to oppose therapeutic cloning.

In a sort of ironic twist, this is probably the reason I find the most refreshing because I find it the most honest and the most straightforward.

What this ban will do, this moratorium will do is give opponents of this lifesaving process time to marshal their forces and their resources in this ongoing battle.

Fortunately, there are those of us on this side who will continue to fight just as strongly for the pursuit of therapeutic cloning, and so the debate will continue, which brings us to the second reason that was said, which is that it would allow the country to reach a moral consensus.

For me, this is probably the most disingenuous statement of all. Poll after poll has shown that the majority of Americans do support therapeutic cloning as long as it is strictly regulated. What other sort of moral consensus do we want to achieve?

Additionally, has America ever reached true moral consensus on any controversial issue? Abortion has been legal for 30 years, yet a vocal minority still fights that legality today.

Barring the recent circuit court decision in Northeast, the death penalty has been legal for most of this country's existence and still enjoys the support of the majority. Yet, again, a vocal minority fights to eliminate this practice.

Clearly no moral consensus has been reached on these controversial issues. No reasonable person, and certainly nobody with the esteemed credentials held by Council members here, can truly expect that therapeutic cloning will be solved or will be the subject of moral consensus within four years.

Finally, it has been said that a moratorium will allow us to gather more information. How will that happen? Through animal research?

The history of clinical research is ripe with procedures that have vastly different effects on humans than on animals. The only way to truly learn is to hope that overseas researchers can provide us with some answers as they work on human cells.

In hoping for that, unfortunately, we look morally weak. We admit that as a nation, we do not have the moral strength to defend the rights of millions of Americans with chronic diseases. Instead we allow others to do it. If the results are good, we jump on the bandwagon. If the results are bad, we decry their work with moral outrage.

As I have said, a moratorium is truly a ban. It is a position that after more than 22,000 injections in my lifetime I find tremendously distressing, damaging and distasteful.

I hope you can forgive the anger and bitterness in my comments, but I feel that this decision has taken a great hope away from me.

If the administration issues this moratorium, it risks making an appalling mistake as it abandons millions of Americans.

Thank you very much for your time and this opportunity.

CHAIRMAN KASS: Thank you very much, Mr. Tibbits.

Next, Dr. Joann Boughman, please. Please.

DR. BOUGHMAN: Dr Kass and distinguished members of the Council, my name is Dr. Joann Boughman, a medical geneticists, Executive Vice President of the American Society of Human Genetics, which is one of the 21 member societies of the Federation of American Societies for Experimental Biology called FASEB.

It's my privilege to provide a voice on behalf of FASEB's combined membership of over 60,000 biomedical researchers. We sincerely appreciate the Council's thoughtful deliberations on the issues of human cloning and the intense effort we know it required to produce your report entitled "Human Cloning and Human Dignity: An Ethical Inquiry," and I thank you this opportunity.

FASEB has clearly stated strong opposition to human reproductive cloning or, in your terms, cloning to produce children. We agree with your conclusion that cloning to produce children is unsafe, morally unacceptable, and ought not to be attempted. We support your recommendation of a ban on closing to produce children.

With regard to cloning for biomedical research, FASEB has asserted that scientists proposing well designed and responsibly conducted research using cloning techniques should be able to continue to pursue this work, including the use of somatic cell nuclear transfer, or SCNT.

We agree with you that such research could lead to important knowledge about human development, and that it may result in treatments for many human diseases.

It has been suggested by some that adult stem cells and fetal stem cells, like embryonic stem cells, including those derived from SCNT, may have enormous therapeutic potential. We as scientists readily acknowledge that there are many unanswered questions regarding the success of these proposed therapies produced from all of these techniques.

It is precisely because the scientific community is dedicated to seeking answers to biomedical questions that we stress that research on all types of stem cells must continue so that we may determine which sources and types of stem cells hold significant promise for treating human disease.

From the scientific perspective, halting this research process through a moratorium or an outright ban precludes the required scientific advancements to achieve success and implementation of these therapies.

We, therefore, agree with the substantial number of council members recommending continued research with appropriate regulation.

The scientific community clearly recognizes and, in fact, research scientists thrive on differences in interpretation of data, varieties of opinion and perspective, and healthy skepticism. The divergent opinions that remain among members of this distinguished Council, even after this group's considered deliberation and debate, in our view, serve only to highlight the need for more substantive information, not merely more discussion and debate.

That information can be obtained only through the careful pursuit of responsible scientific inquiry.

I would finally simply like to recognize that it is out of respect for human life and humanity that people dedicate their own lives to searching for ways to assist others so that they might attain, maintain, or regain their own quality of life.

Thank you.

CHAIRMAN KASS: Thank you very much. Next, Dr. Maxine Singer, the Coalition for the Advancement of Medical Research.

Please, Maxine. Nice to have you with us.

DR. SINGER: It's nice to see all of you. Good morning.

I have come this morning to represent the Coalition for the Advancement of Medical Research, which is referred to as CAMR. I come in that capacity as a member of the Public Policy Committee of the American Society for Cell Biology. The Society for Cell Biology is one of the organizations in this coalition and was one of the founding members of the coalition.

The coalition includes 70 patient organizations, scientific societies, universities, foundations, and individuals who have life threatening disorders and disabilities.

And I'm here to present to the members of this Council a petition, which I think you've all received, signed by 2,164 teachers and scientists in medical schools and universities across the country. The signers come from all 50 states and include eight Nobel Laureates.

The petition signals that a large group of informed medical and scientific opinion in the United States does not agree with the Council's call for a moratorium. The role of science is to discover answers to the unknown. The moratorium that a majority of the members of this commission support would, as your member Janet Rowley said yesterday, be nothing more than four more years of ignorance.

A four-year prohibition on research in the United States has ramifications well beyond the four years. The next generation of American scientists would be discouraged from even entering the field of biomedical research.

So it's entirely possible that a four-year moratorium could harm science in the United States for an entire generation or perhaps longer.

The rest of the world, as the result of the moratorium, could very well bypass our country, which is currently the leader in biomedical research.

That's the end of my remarks.

CHAIRMAN KASS: Thank you very much.

DR. SINGER: You're welcome.

CHAIRMAN KASS: One more, Richard Doerflinger of the U.S. Conference of Catholic Bishops.

MR. DOERFLINGER: [declining an invitation to take a seat] I'd just as soon maintain separation of church and state.


MR. DOERFLINGER: I had a prepared text, but I guess I'd like to depart from it to say a couple of words about what's just been said here.

I think it's fair to say, and past witnesses before this body who are proponents of research cloning have conceded it as well; it's fair to say that there is nothing a four-year moratorium is going to prevent that would not be prevented in any case by the simple, practical medical and scientific problems inherent in trying to use embryonic stem cells from cloned embryos in human beings.

We've heard from proponents before that we may well be talking about decades before any of this could be used in humans, and that may even be true of non-cloned embryonic stem cells because of the problems in tumor formation, chaotic growth when transplanted into animal hosts, and so on.

In diabetes, in particular, we know that the latest trials and use of embryonic stem cells were a pretty abject failure. They produced two percent of the needed insulin. All of the mice died.

Maybe that will be improved over the next few years of animal trials and maybe not, but it's certainly not going to be something that is prevented by any moratorium on specifically human cloning.

There are many avenues that are moving forward now and already helping and in some cases seeming to cure people with diabetes, including the use of adult islet cells from cadavers, adult pancreatic stem cells, stem cells that produce insulin that are originally derived from other sources like liver, bone marrow, and skin, and even in one of the recent issues in the New England Journal of Medicine, the use of monoclonal antibodies simply to make the body's immune system stop attacking itself so that the body's own natural resources in adult stem cells can kick back into action and supply some of the needed insulin.

All of those and more are far closer to helping human beings with diabetes than anything from embryonic stem cells or cloning, which so far have been a pretty complete failure in treating diabetes as fetal tissue from abortions was a pretty complete failure before.

I think the moratorium, while it is certainly something that I welcome because I fear the alternative of complete inaction, I do not think it is a victory for either side. I think it does allow a great deal of research, including research in animal cloning and in stem cell research to continue, and it allows us all to continue to present our viewpoints and frame proposals.

One thing I think it also allows us to do is to continue the debate about what one would really mean by even a ban on cloning to produce children because even though there is surface unanimity on this Council that such a ban is needed, there is on this Council and in Congress a great deal of disagreement on exactly what that could look like if one wants to avoid simply producing a ban that has the government mandating destruction of embryos while allowing them to be created by cloning.

I don't think the proposal in the footnote of the majority report of the Council does the job. I think it may well reduce to the kind of ban that many of us find morally unacceptable or produce a great many serious loopholes.

And so a four-year moratorium on all human cloning also provides us with an opportunity to figure out whether and how one would even want to ban reproductive cloning without raising more moral problems than one is trying to solve.

The other reason for a moratorium that I think is very compelling is that if Congress and the nation do nothing, we are, in effect leaving the most irresponsible researchers in our society who we all deplore free to frame national policy on this issue by default, to simply present us with a fait accomplis.

At least a temporary moratorium on all human cloning is urgently needed now to prevent this result, and I thank the Council very much for leading the way in proposing this.

Thank you.

CHAIRMAN KASS: Thank you very much. That exhausts the list of names that I have for people requesting public comment.

Our next scheduled meeting is in September the 12th and 13th. School is out for the summer.

Thank you very much.

(Whereupon, at 12:05 p.m., the meeting was concluded.)

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