Summary and Excerpts

BioAgenda Stem Cell Panel: Joan Samuelson, Richard Hayes, David Gollaher, William Hurlbut, Lord Naren Patel, and Jason Pontin

At the BioAgenda Summit in March, a distinguished panel debated the latest on stem cells, with MIT Technology Review Editor-in-Chief Jason Pontin moderating speakers representing various points of view – left, right, center, and beyond. The discussion was lively and fascinating. Below are some excerpts from the discussion.

Panel

Lord Naren Patel of Dunkeld, MD, Chairman of the United Kingdom Stem Cell Oversight Committee; Member, House of Lords; Fellow of the Royal College of Obstetricians and Gynecologists

Richard Hayes, PhD, Executive Director, Center for Genetics and Society

William Hurlbut, MD, Bioethicist; Consulting Professor, Stanford University; Member, President's Council on Bioethics

David Gollaher, PhD, CEO and President, California Health Care Institute
 
Joan Samuelson, JD, President, Parkinson's Action Network: Parkinson's Disease patient

Part 1: Presentation from Lord Patel about Stem Cells in the UK

The topic at the summit started with a report from Lord Naren Patel, Chairman of the United Kingdom Stem Cell Oversight Committee; Member, House of Lords; he explained how the UK has organized a regulatory structure to move forward with stem cell research that is supported by Parliament and most of the country.

(For more info on how the British did it, check out "Is U.S. leadership in science now over?" from the "Biotech and Creativity" article in the San Francisco Chronicle, by David Ewing Duncan, published on July 24, 2004.)

Comments from Lord Patel

The Status of the Embryo

"The principles underpinning the use of embryos in research, as Parliament saw it, was that the embryo of a human species has a special status, but not the same status as a living child or adult. The human embryo is entitled to a measure of respect beyond that accorded to the embryo of another species, but such respect is not absolute and may be weighted against the benefits arising from proposed research. The embryo of the human species should be afforded some protection in law.

"70 percent of the population supports stem cell research.

"So yes, we do have concerns about the future. We believe we have the right regulations in place right now. Most importantly we have a huge consensus in our country right now to allow the work to progress as long as the public can be satisfied that there is regulation in place and there is accountability."

PART 2: Excerpts from the Discussion with the Entire Panel

Pontin's Intro

Jason Pontin: "No issue in biomedicine is as contentious but at the same time no area of science in my lifetime has held out such extraordinary hope. And the hope has usually been defined in the following way: the hope is that the development of human stem cell lines might allow for therapeutic purposes the replacement of diseased tissue but perhaps much more exciting to many of the scientist I have talked to is that stem cells might provide a full toolbox to understand the expression of a disease."

The South Korea Cloning Scandal

Pontin: "On stem cell research fraud of Hwang Woo Suk - What happened?"

Lord Patel: "Ambition, need to prove quickly, expectation, and an unregulated environment."

Hayes: "One lesson we can learn if we are sincerely interested in avoiding catastrophes like happened in Korea, if we are sincerely interested in medical research, maybe we want to put [cloning] on the back burner, do the real research we can with IVF derived embryos, see where we go, and see what happens after that."

About the Federal Government's Restrictions on Funding for Stem Cells

Samuelson: "There is another pressure that has been giving this such prominence, and that is the government hindering the progress that might have been happening over the last several years because of the presidential policy against funding of embryonic stem cell research and SCNT. So you've got discussion in the public arena about the scientific promise, which there is lots of data to support, scientific promise at least, and then year after year after year of that going unfunded…so that by the time money becomes available, then the stakes are higher than they ever would have been before."

Hurlbut: "I think it's important to recognize that whatever constraints we have in this country are not simply imposition of presidential opinions. The President in issuing his executive order in August 2001 was as he declared upholding the Dickey amendment, which was passed by the Congress every year since 1996 which strictly forbids the use of federal funding for any research that involves the endangerment or destruction of human embryos. So this a wider policy issue, its not just the President, and it is a difficult issue. Ever since IVF we debated should the US government, taxpayer moneys be allocated to a kind of research that a large percentage of our population has moral concerns about and it was decided that it should not, back in 1996, and now we are facing more and more promise, and more conflict over that but it is not simply presidential politics."

Samuelson: "It is certainly federal politics, will you accept that?"

Hurlbut: "Yes, that means national politics, all of us involved."

Stem Cells Is Speculative Science

Hurlbut: "I think this is a really bad issue. I think we would do really well to solve this issue and allow this opprobrium to come off of the field because I believe there are very interesting advances. I mean, this is speculative science, we should acknowledge that. But, I think we have to acknowledge the depth of conflict in our civilization over this. It is easy for those of us in educational centers like universities, or well trained in science to think that our particular take on it is the one that all sensible people would take. But that is to denigrate the opinions of our fellow citizens. I think there is a vast and actually thoughtful other opinion on that."

Implications of California Referendum to Fund Stem Cell Reserach – Views from the Left, Right, and Center

Pontin: "What are the implications and promise of the CA initiative, Prop 71?"

Gollaher: "Prop 71 passed…$300 million a year for embryonic stem cell research…mini NIH making grants for peer-reviewed research…problem is opponents sued to block its implementation. Advocates of stem cell research will win…part of the problem we've had in CA is that during this time in which the Institute hasn't been able to issue grants, hasn't been able to function, it's really been a piñata for the press, for its critics, because it hasn't been able to show any results or any positive action. That has put it in a position of weakness."

Hayes: "These technologies are more than just the latest or an especially promising set of medical research possibilities. These technologies talk about the potential of altering the human species. And if you are talking about something of that consequence, you really do want to have a broad buy-in. And maybe yes that does involve a little more discussion, a little back & forth, maybe some compromise, but if we are gonna move forward in a way that really serves the needs of the human species we want to do it in an inclusive way and Prop 71 did not do that."

Samuelson: "The process was very carefully defined…7 million Californians supported it. I guess I'm speaking out of frustration because we are in this position of being hampered from proceeding and getting the first results and getting all of these processes into place because we continue to do battle with the opponents of stem cell research for ideological reasons and it seems there are so many obstacles that we can't really begin to make the case that we are doing what the state wanted us to do. Californians were brilliant in voting for it."

Hurlbut: "Part of what is so interesting about this is that if you think about Prop 71 and larger historical context, it was the greatest democratization of science that the world has ever seen. I mean there has never been a large population that voted to tax itself to open up a new area of science. Science is usually hierarchical. It remains a civics experiment and we don't know how its going to turn out to see whether this kind of agency can work to fulfill the scientific contract that it has with the California people. The problem is in that cutting out the California legislature they also put them on the sideline looking over the fence to $3 billion of public funds and the natural impulse…it was their natural instinct to say that we need to be part of this, it's a state agency, it needs to be accountable, we are the people's servants, there has been an enormous ongoing debate in the legislature about how does it participate."

Samuelson: "It's a grand experiment. It could test if it doesn't succeed, people's trust in the initiative process and in science and in the funding of biomedical research. It is doing something that is very novel, it's putting a lot of money and making it available to biomedical research but it is not just saying, "do great science". It's saying, "get cures and in a finite amount of time." "What the real challenge is going to be is not so much the ethical debate which is important, and important to me, but this other challenge of figuring out how things get translated quickly, in time for the impatience of the millions of Californians who live with a terrible disease…"

PATEL: "I Feel Like I Walked into a Family Feud"

Patel: "I feel like I walked into a family feud here. The important thing here is that scientists, ethicists, theologians, lay people, everybody uses the same language when they talk about issues. Hence you are quite right, I use the language embryo because that is what we are referring to…If anybody begins to use a different language to either promote human embryonic stem cell research, or use a language to do the reverse that would be wrong. The initial promise has raised expectations amongst the lay people considerably, which will not be fulfilled in the short term. Progress in science will be slow, we are talking here maybe 2015 in a step-wise fashion, where we might see some progress in treating some of the diseases you mentioned. But it is not going to be tomorrow."

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