Friday, October 06, 2006

Text of Statements from CGS on Politics of Stem Cell Research

Here are the texts of remarks made by officials of the Center for Genetics and Society at a Sept. 19 briefing for reporters and editors on the politics of stem cell research. The statements are not currently available on the center's web site.

Remarks by Marcy Darnovsky , Associate Executive Director, Center for Genetics and Society

I’m going to talk first about several kinds of over-promising and distortion that are common in the stem cell debate. Then I’ll say a few words about some shifting political alignments and developments.

[Exaggerating cures]

Exaggeration is really one of the hallmarks of this issue. It’s pervasive on both sides of the debate, and each side’s hyperbole feeds the hyperbole of the other.

Opponents of embryonic stem cell research consistently overplay the current capabilities and the future potential of adult stem cells, and downplay what most scientists believe about the promise of embryonic stem cell research. Their major point is undeniable – that deriving stem cells from embryos necessarily destroys those embryos. But their objection is a minority position in the U.S., and one that’s being imposed on the majority.

The focus on embryos does another kind of disservice as well. The divide in our country over the moral status of human embryos, and over abortion rights, has overwhelmingly dominated the discussion of stem cell research, burying other important concerns. We need to look at this issue through a different lens.

Turning now to the situation among supporters of embryonic stem cell research: Far too many scientists, politicians, biotech entrepreneurs, and research advocates regularly exaggerate the likelihood and imminence of medical advances. The use of the word “cures” is routine – though as Jesse mentioned, the research is at an early stage, and right now there are no treatments or therapies based on embryonic stem cells, let alone cures.

Nonetheless, both the 2004 California ballot initiative and this year’s voter initiative in Missouri have the words “stem cell research and cures” in their titles, and the supporters of the Missouri initiative call themselves “The Missouri Coalition for Lifesaving Cures.”

And just recently the Democratic Senate candidate from Missouri, who strongly supports the stem cell initiative, used the words "lifesaving," "cure," or "save [a life]" 22 times in a 732-word interview published by the Associated Press.

Statements like these seriously degrade public understanding and distort political discourse. Perhaps more surprisingly, similar exaggerations have also become common in the world of science, in statements by scientists about stem cell research. It’s always been considered a matter of scientific integrity to refrain from making claims in the absence of clear evidence. But in the stem cell world, that principle is being regularly violated.

One example: It’s common to hear that embryonic stem cell research will result in cures for Alzheimer’s disease, when in fact, unfortunately, the idea that stem cells have the potential to treat Alzheimer’s is far-fetched.

Knowing this, Rick Weiss, the Washington Post’s science reporter, called a prominent stem cell and neurology researcher to ask why he and his colleagues weren’t correcting the misunderstanding. The scientist’s answer: "To start with, people need a fairy tale... they need a story line that's relatively simple to understand."

[Other distortions]

Other sorts of exaggerations and distortions are also rampant in the stem cell debate.

Opponents of embryonic stem cell research regularly blur the distinction between reproductive and research cloning. This can be seen as a logical extension of their position that an embryo is a full-fledged human being. But failing to acknowledge the difference between a cloned child and a cloned embryo certainly skews consideration of the issue.

Opponents of embryonic stem cell research often misrepresent concerns voiced by women’s health advocates and groups like the Center for Genetics and Society about issues such as procuring eggs for research. In Missouri, an anti-abortion rights group that opposes the initiative used our words to support their position, neglecting to mention that we support embryonic stem cell research

On the pro-embryonic stem cell research side, we’ve seen a clear pattern of overstating the economic benefits of allowing or funding research.

The coalition backing Missouri’s Amendment 2 is promoting a study that claims the initiative will "reduce state health care costs by billions." To the extent that it’s supported at all, this conclusion is based on savings that would be realized by curing a list of diseases that includes very unlikely candidates for stem cell research, such as stroke and Alzheimer's.

We saw similar hand-waving in the campaign for the California initiative – in fact, the economic studies were done by the same hired group.

[Why it matters]

Why do the exaggerations and over-promising matter?

First, they do real damage to public understanding, and to the possibility of a meaningful debate on a set of complicated issues.
Second, overblown claims can be very hurtful to those who suffer from debilitating diseases, cruelly raising hopes that are likely to be dashed.
Third, hype about stem cells has played a role in overheating the environment to the extent that we’re seeing fraud and embezzlement – as in the case of South Korean cloning researcher Hwang Woo Suk – and questionable claims like the announcement a few weeks ago by Advanced Cell Technology that seemed based more on their need to raise money through a stock spike than on any real advance.
And finally, hype is bad for science. It sets the stage for backlash or bad policy or both.

[Political alignments and developments]

I want to say just a few words about the political alignments on stem cell research. We’ve talked a fair amount on this call about the distortions caused by the political polarization on this issue. But in fact, there’s growing bipartisan support for stem cell research using embryos produced but not used for assisted reproduction. We’re seeing a growing realization that Americans can be religious and support embryonic stem cell research; that they can be liberal and support responsible regulation of stem cell and cloning research.

We’ve looked at opinion polling on this question. Stem cell research is even more subject to wording effects than many other issues. But our analysis of polls that provide balanced background statements shows clearly that

support for embryonic stem cell research has been growing,
significant uneasiness about the use of cloning techniques for stem cell research has persisted

Though some Democrats continue to use embryonic stem cell research as a wedge issue, the recent Congressional vote on extending federal funding showed that more and more conservatives are supporting it. There will eventually be a less restrictive federal funding policy, and it’s past time to shift the conversation to the question of how stem cell research will be conducted – what oversight and what rules of the road do we want to put in place.

This is particularly important when it comes to research cloning. An important piece of that story rests on the issue of women’s eggs for research. Here in California, the Center for Genetics and Society and several women’s health groups worked with a Democratic state senator on an eggs-for-research bill. It passed both the California Senate and House with near-unanimous votes, and is now sitting on the Governor’s desk awaiting his signature.

Let me wrap up with 3 points that we think are key:

First, the stem cell debate until now has focused so much on the status of embryos that some really important issues have been eclipsed
Second, the political polarization on embryonic stem cell research has created an atmosphere of hype, distortion, and as a result, public misunderstanding
Third, responsible oversight and enforceable regulation of stem cell research – the kind that are in place in many other countries with research efforts – are a high priority for the U.S. Putting a comprehensive policy in place will be a plus for everyone.

Remarks by Jesse Reynolds, Project Director- Biotechnology in the Public Interest, Center for Genetics and Society

These basics of science and policy can be complex, and key distinctions are easy to overlook. I’m sure you are familiar with much of this, but I want to try and get everyone on the same page.

The distinction between stem cells from adult body tissue and those from embryos has nearly monopolized the debate about stem cell research. But many people are not clear about a second distinction between two sources of embryonic stem cells. And its in describing these techniques where perhaps the most frequent mistakes in the coverage of stem cell research occur.

The first, which has been used to produce all currently existing embryonic stem cell lines, is to use embryos created but not used in fertility treatments.

The other is to use embryos created by the cloning process, called somatic cell nuclear transfer, to derive new stem cell lines with specific genetic compositions. This process of cloning for stem cells is sometimes called research cloning, therapeutic cloning, or just SCNT.

Cloning in stem cell research remains at an early, speculative stage. Although it has been receiving much attention, it is a tiny portion of stem cell research. Only a handful of labs in the world are working on such research cloning.

Research cloning brings up issues of concern beyond the moral status of the embryo.
First, is how to treat the women who may provide the eggs has been an issue of debate, particularly whether to pay them. Unlike “normal” stem cell research, many human eggs are needed for it. Egg extraction is a procedure with significant medical risk.
Second, treatments from cloning-based stem cell research are likely to be extremely expensive – and that they might therefore increase health inequities.
Third, the technique opens the door to unacceptable applications such as reproductive cloning.

Because “cloning” has a strong negative connotation, advocates and opponents for research cloning manipulate the language. The advocates just call it SCNT, imply that no embryo is created, and also imply that it is currently a critical part of stem cell research. The opponents will call it “human cloning,” in an effort to blur the distinction between cloning for stem cell research, and cloning for reproduction.

The distinction between research cloning and embryonic stem cell research in general is key to understanding and describing the scientific and political landscape. But this blurring between them has led to many outright inaccuracies in reporting. As an example, just last week, a columnist in a major Missouri newspaper wrote about a person whose cancer had been put into remission by a cloning-based stem cell treatment– when in fact stem cell lines have never been successfully derived from clonal embryos.

Moving on to policy, I’d like make a second key distinction – this one among what is allowed, what is regulated, and what is funded. I’ll start with federal policy.

There are no bans on stem cell research at the federal level, despite the rhetoric of some research advocates. Of course, laws that apply to medical research in general apply. Congress has supported a ban on research cloning, but the bill lacks votes to overcome a filibuster in the Senate.

There are also no regulations specific to stem cell research at the federal level. This is unlike other countries that have stem cell research programs, and despite widespread recognition among scientists that this work raises new oversight and regulatory concerns

The only national guidance is the area comes from the National Academies, a nongovernmental organization. It’s issued recommended guidelines for the conduct of stem cell research. These, for example, oppose paying women who provide eggs for research cloning. But these are not enforceable regulations, and some researchers have indicated that they will not necessarily follow them.

As you know, federal funding of human embryonic stem cell research has been restricted to the funding of work with lines created before August 2001. The recent bill that resulted in President Bush’s first veto, would have undone these restrictions. The passage and signing of this bill would have provided the opportunity to have discussions about federal oversight of this important research.

Moving on to the states: The lack of federal funding, and the accompanying lack of federal oversight, has resulted in an emerging patchwork of state laws and regulations. One state – South Dakota – bans the human embryonic stem cell research entirely. At least five other states ban research cloning. Research cloning is explicitly permitted in six states. Of course, when not cited in law, these practices are implicitly allowed.

Only two states are developing regulations for human embryonic stem cell research, California and Massachusetts. California will have two sets of regulations – one for state funded research, and another for any other source of funding.

Five states publicly fund stem cell research: California, Connecticut, New Jersey, Maryland, and Illinois. At $300 million per year for ten years, California’s program dwarfs the others. All these state funding programs except Maryland’s intend to fund research cloning.

Finally, I’d like to provide some details on Missouri, which is currently the site of the most prominent stem cell research debate. The Constitutional amendment before the voters would ensure that all stem cell research that’s legal at the federal level remains legal in the state. Because there are currently no laws specific to stem cell research in Missouri, the amendment would simply preserve the status quo.

It’s true that each year some conservative legislators introduce a ban on all cloning, including research cloning. But this ban is very unlikely to become law – it’s never even gotten out of committee in either house, and the governor has promised a veto. Moreover, research cloning is not even being done in Missouri. It is strange that the proponents of the proposed Amendment raised sixteen million dollars, as of the end of June, just to preserve the status quo. That is already more than has ever been spent on any race in the state.

The powerful emerging technologies of stem cell research are being developed largely without oversight. Some politicians talk of bans, and others advocate for protective constitutional amendments. But what’s missing is effective regulation to ensure that it is done right. Sphere: Related Content

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