142 Patient Advocacy Groups Can't Be Wrong?

Yesterday, the pro-stem cell Coalition for the Advancement of Medical Research (CAMR) held a Capitol Hill press conference at which 142 patient advocacy groups urged that the Bush Administration's prohibitions on stem cell research be overturned.

?While the Administration's policy was met with great hope, recent developments in the research demand an expansion,? said my friend Daniel Perry, President of CAMR. ?In the past three years since the policy was announced, more than 4 million Americans have died from diseases that embryonic stem cell research has the potential to help. We just can?t afford to wait any longer,? he added.

At the CAMR press conference, a bipartisan coalition of federal legislators announced that they are introducing a bill that would lift federal funding restrictions on stem cell research. Never mind the issue of federal funding, the limits set by the Bush administration have had a chilling effect on private stem cell research efforts?not least of which arises from the considerable bureaucratic hassle of keeping federal pipettes and post-docs separate from private pipettes and post-docs.

It matters a lot to cardiac, Alzheimers and cancer patients whether a treatment is developed a year from now or ten years from now. Bush might want to consider just how many voters these patient advocacy groups represent.

Comments

[spoodge]

Sweet mother of Christ! Theocracy blows.

[Warren]

How about, instead of restricting federal funds from those groups the 'in' crowd disapproves of, we restrict them from everyone.

[brooklyn dave]

Good luck to CAMR in getting that bill through. We all know that George W. has an Evangelical view of the world and does consider stem cell research verboten because embryos are destroyed. But I can't help thinking more of the political aspect to certain decisions as well. He wants to assure his social conservative base that he hasn't abandoned them. I wonder how aware he is that the more fiscally conservative/libertarian wing of the Reoublican party is totally pissed off at him?

[Ruthless]

Is this the rare topic on which Hit and Runners opinions are unanimous?

[Evan Williams]

Warren,

Ronald, anticipating precisely the kind of comment you made, said, "Never mind the issue of federal funding..."

It's a given that the majority of Reason/Hit&Run readers & commenters do not support the theft of your wealth by the state in order to fund scientific research. But Ronald put that caveat in their so that this discussion could perhaps move past that sticking point. The reality is that federal tax revenue DOES fund scientific research. Now, given that, what's your take?

[zorel]

personally I have no problem with stem cell research (and I am generally pro-abortion rights)

but I have two questions:

1. Federal funds are already used for a number of(70 ?) existing lines of stem cells (rationale being, no more 'fetus killings')

2. adult stem cell research can be funded by Fed - is this line of work promising? If there is a marked difference in the potential of adult stem cell vs. embryonic stem cell, how come the private companies don't spend money (we know if they comeup with something the ROI is there)

[Ken]

Is it ore moral to flush the unwanted embryos down the drain - I think not.

[Ken]

Is it more moral to destroy the many unwanted embryos rather than use them for research, I think not.

[Evan Williams]

What do you do with them then?

[Warren]

Evan,
Good point. My bad.
I despise Bush more each day. It's getting to the point where, the fact that he's against it, is compelling evidence that it's vital to the survival of the republic. Seriously though, I'm pro-stem. No way do I acknowlege our political leaders as our ethical autocrats.

[Reason]

Looks like no bill this year:

http://www.longevitymeme.org/news/view_news_item.cfm?news_id=1033

However, as I point out elsewhere, this is really just the tip of the iceberg. Federal funding is small potatoes compared to the private funding that isn't happening because of the threats to ban therapeutic cloning:

http://www.fightaging.org/archives/000155.php

[J]

zorel,

Bush's initial claim that there were 60-80 (I don't remember the exact number) stem cell lines available turned out to be a gross misrepresentation or a large error, depending on your angle. As it turns out, there are probably fewer than 10 lines that are actually available and useful. Many of the lines he initially mentioned aren't available to scientists (not sure why or who has them), and many that are available are contaminated with other animal cells, old, difficult to maintain, or have some other problem that makes them unusable. The exact number varies depending on who you talk to - generally somewhere between about 5 and 15.

I'm no expert on adult vs. embryonic stem cells, but my impression is that the jury's still out on their relative usefulness. I did see a research talk about 9 months ago by a guy who was studying (with private $, from Howard Hughes Medical Institute) the use of embryonic stem cells in the treatment/cure of diabetes, and he claimed this work couldn't be done with adult stem cells. My impression is that, leaving aside moral arguments for the moment, from a pure scientific/medical usefulness standpoint most researchers in that area think there's enough potential in embryonic stem cells beyond that of adult stem cells that the research is worthwhile.

[jc]

Forget about federal funding of the research, if private research indicated that the methods had a 100% cure rate, would Medicare pay for it? A significant number of people are targeted for votes using such schemes as the prescription drug plan dreamed-up by the admin. If its a moral issue that keeps the fed research $ down, the same moral stance would keep the fed from paying for stem-cell based treatment. I'm all for Medicare not covering stuff (like, everything) but a significant voting bloc might demand it.

What worries me is eventually people won't get into a moral lather about it and the fed will wind up spending even more money on stem-cell work than ever. Now's a perfect opportunity for feds to say "We won't fund any of the research and because of that we won't pay for any future treatments. But we won't make it criminal to do either the research or the treatments. So if you think you might want a stem-cell procedure in the future, now would be a good time for you to buy private health insurance that will cover it."

I can dream, can't I?

[Vigilance Matters]

"Never mind the issue of federal funding?" That is the ONLY issue at stake here. The rest is smoke and mirrors.

How many voters really care if their tax dollars fund the harvesting of baby parts for medical science? I'm pretty sure all of them have an opinion. And those who are in favor of "playing god" are welcome to donate their own damned money.

An anti-abortion politician would never cave on such a question, and a true libertarian would never even allow it to become one.

[J]

I think some of the people making a big deal now about federal funding for embryonic stem cell research are the ones putting up the smokescreen. I'm talking about the ones who never spoke up about the federal government being involved in funding research until now, and suddenly it's a terrible outrage. (I realize there certainly have been people who were critical of federal involvement all along, but a lot of the people complaining now weren't singing the same tune a little while back.) They're only opposed "on principle" to federal funding when it's funding research they don't approve of.

It's like some of the people who were suddenly outraged that the government would have the audacity to tell them what relationships they had to recognize as soon as gay marriage became an issue. Before that, state-sanctioned marriage was just peachy.

[brooklyn dave]

I think the argument is still in the allowability of stem cell research rather than if it should be federally funded. One hurdle at a time. Ken's comment asking if it were "more moral to flush those embryos down the toilet" is a good one. Definitely no good use is going to occur there. Funding and the mere allowance of such research to occur are two spearate issues. One could be pro-abortion in the sense that if a woman wants to have one, the government shouldn't tell her she can't. But as far as paying for it, no way.
Maybe I am a little philosophically soft on government spending money for medical research when I think of the million and one ways they waste our money on all sorts of other bull shit

[joe]

I'm with the stemmers, but I'm not sure their immediacy argument is a very good one. The gap between what can be achieved with, and without, more stem cell lines in a year is probably pretty slim. It's the gap in 15 or 50 years that's significant.

Yeah yeah, "one life saved - what if it was your grandmother" - like I said, I'm on their side.

[ABC]

Stem cell research has NOT been banned. Private companies are free to perform all the stem cell research they want. That they have not chosen to perform much should indicate to you whether this is a legitimate scientific issue, or simply a political issue.

If stem cell research had the potential to produce marketable therapies, you would not need any federal funding at all. This is one of the big reasons to oppose federal research funding - it misdirects attention away from legitimate research and towards "favored" research.

PS - my wife works in drug discovery for the 2nd largest drug firm in the world. They spend billions in research each year. Their corporate goal is to make just enough money to fund their research, so that they can cure disease. These are scientists, not MBAs, running the company. And they have NO interest in stem cell research.

[Greg]

I regularly scan the news for breakthroughs on stem cell research, whether embryonic or adult. Haven't heard a single positive development on the embryonic variety, but the actual clinical uses of adult stem cells are booming.

[joe]

ABC, free market, "legitimate" research has created three drugs that can give you a boner. Think the R&D costs spent on this vital issue have hit $1 billion yet?

You expect me to believe we wouldn't be better off spending some of that on Alzeimer's and Parkinson's?

[Gary]

"Never mind the issue of federal funding . . ."

Why? Why disregard the central issue in this matter? First, the complaint from the research organizations in question AND from some here is not "May we do it?" but "Why can't we bill the public?" Federal funding is EXACTLY what's being demanded.

Second, if the problem is "the considerable bureaucratic hassle of keeping federal pipettes and post-docs separate from private pipettes and post-docs," doesn't that argue AGAINST statist involvement rather than give us reason (remember that word?) to invite the government into labs?

If a researcher is convinced that embryonic stem cell research holds such promise, there's nothing stopping them from doing it privately and reaping what they must believe will be a great benefit from doing so. Demanding public sponsorship is a terrible idea for both moral AND scientific reasons.

[Mo]

All you stem-cell reaserch = baby harvesters are being diingenuous. If it did equal baby harvesting then why keep it legal at all? Also, why not go after in vitro fertilization, which creates the unwanted embryos that would be used in this research?

ABC,
Don't you think that the firm your wife works for is cognizant of the fact that they won't get government funds directs their research to other discoveries that would get government funding? If it costs x to do stem cell research and only the adult stem cells (not to mention other diseases) get n million dollars, then the cost to do adult stem cell is x-n while it remains at x for embryonic research. Which do you think will get reaserched? They may be scientists instead of MBAs, but they still have a P&L at the end of the day to keep an eye on. Costs matter and if the government is going to use my money on scientific research, I don't want it to ignore a promising avenue because of someone's religious beliefs (and we aren't going to get the stem cell research money back, it will just go to some other wasteful government program).

[zorel]

J,

Thanks for the info.

All you all libertarians, now the Fed not funding research is BAD?

I wish this damn administration would NOT fund a whole lot more stuff (I can't believe a supposedly republican admin spending like drunken sailors)

W. is a frigging liberal (albeit a 'born-again' one)

[Mona]

I am hopelessly ambivalent on the issues of abortion and embryonic stem cell research. But as Gary inquired, if there is such promise in it, then why are the private companies not investing boku R&D dollars there? You can't tell me keeping that research separate from federally funded projects would be a big hurdle if it were likely the company could produce the drug that cures Alzheimers, Parkinson's and cancer? Why, the profits to reap would be astronomical.

Some citizens feel killing unborn human offspring, and harvesting them for scientific research, is part and parcel of a Nazi-like science run amok. I disagree with but understand that POV, and wonder why libertarians think citizens who feel that way should be compelled to pay for that which they find so abhorent?

Pro-stem cell folks can, if they wish, establish foundations to do embryonic stem cell research in spades. So do it. Why demand that the ardent pro-lifer next door also pay for it? How does thit fit with the "live and let live" philosphy which libertarians usually understand is the key to peaceful co-existence? You all can pay for it if you want, but on what moral basis do you compel others who despise the project to also do so?

--Mona--

[Jimbo]

Joe,

If the topic's not Central -- oops, I meant City -- planning, shut up. The "boner" drugs, as you so eloquently call them, were actually byproducts of a search for an effective heart medication, Sildenafil. So the money was in the right place in the first place.

[J]

Just because there haven't been any big private breakthroughs using embryonic stem cells, I wouldn't assume there isn't a lot private research being done (I don't know for sure, but I'm making a moderately educated guess). This is a scientific advancement that is, for the most part, only 6-8 years old. Some of the most optimistic proponents of this research in the late 90's were saying that practical medical applications were _at least_ a decade away, and probably longer.

Mona said: "Pro-stem cell folks can, if they wish, establish foundations to do embryonic stem cell research in spades. So do it. Why demand that the ardent pro-lifer next door also pay for it?"

I think this is a valid point but it's only part of the picture for a lot of the people against funding stem cell research. The fact is that we've already got a well-developed system of federal funding of pure and applied science, and biomedical research gets a shitload of that money, and this is a promising (potentially downright revolutionary) area of research. Ten years ago, not too many people were decrying the use of federal funds for scientific research (certainly not nearly as many as are protesting stem cell research money). I don't think all of these people suddenly became small gov't conservatives/libertarians. I compared it earlier to gay marriage - for so many decades, very few people had any problem with state recognition of relationships through marriage. Now all the sudden they're deeply offended at this intrusion on their personal values. I really don't think there are any convincing practical or scientific arguments against funding stem cell research while still funding so much other work - it's completely a moral issue. If we're going to decide federal money shouldn't be used for things some people find immoral - in marriage, research, or anything else - we need to be consistent about it.

[joe]

Fair enough, Jimbo.

[Gadfly]

Consistency sucks.

[Mona]

J writes: "Ten years ago, not too many people were decrying the use of federal funds for scientific research (certainly not nearly as many as are protesting stem cell research money). I don't think all of these people suddenly became small gov't conservatives/libertarians. I compared it earlier to gay marriage - for so many decades, very few people had any problem with state recognition of relationships through marriage. Now all the sudden they're deeply offended at this intrusion on their personal values. I really don't think there are any convincing practical or scientific arguments against funding stem cell research while still funding so much other work - it's completely a moral issue."

Well, *I* am a consistent libertarian, and I speak to other 'tarians. I do not care whether partisans on this particular issue have been consistent on the federal funding issue per se. I *am* interested in what pro-stem cell libertarians say when a project they support requires that they extract money from neighbor citizens who find the project heinous.

I am willing to consider that the govt properly spends tax dollars when attacking disease -- common defense and all that. But when the means of approaching disease is deeply divisive and controversial, what is wrong with privatizing that particular research? Why make Mrs. Pro-life Tax-payer subsidize that which she finds utterly depraved?

--Mona--

[Jason]

It seems that at least a few people here are simply trying to discount the ethical legitimacy of those who find stem-cell research revolting and are willing to look past the issue of whether the government should be funding it.

The truth is, as has been pointed out earlier, there are two issues at play:

1) Whether embryonic stem-cell research should be allowed (i.e. ultimately, is an embryo a human)

2) If it is allowed, should the federal government (or state or city, for that matter) subsidize such research

While the first issue is certainly not dead, it is, for the time being, settled. Embryonic stem-cell research is permitted. This is not likely to change anytime soon.

Likewise, the second issue is settled: the federal government will not, for now, subsidize this research. This, however, is likely to change sometime in the near future. Because the Fed's position on funding is surely dependent on the administration's ethical stance - but not so much to outlaw the practice completely - we're probably going to see a see-saw effect in this policy for quite a while.

So it is entirely appropriate to focus on whether or not government should be funding research at all, even if this is a ?wake up call? of sorts for those who may not have questioned such funding before this topic became popular. The ethical debate can continue even if private funding is all that?s available, but the concerns over state intervention, unless debated fully and openly, will likely succumb to bureaucratic inertia, as such concerns usually do.

[Michael Fumento]

It's very disappointing to see Ron Bailey write in defense of expanded federal funding for ESC research that, "It matters a lot to cardiac, Alzheimers and cancer patients whether a treatment is developed a year from now or ten years from now." He most certainly knows that there is not a single human trial underway involving ESCs, therefore there will be no ESC therapies for at least five years. Meanwhile, adult stem cells have been used to routinely cure certain cancers (such as leukemia) since the 1980s and several people are walking around now who should be dead but for experimental ASC stem cell therapy that repaired their cardiac tissue. The Washington Post, even as it refused to even acknowledge the very existence of ASCs, recently devoted a whole article to the apparent uselessness of ESCs for Alzheimer's. Meanwhile, ASCs are also being used experimentally to cure a host of human diseases such as sickle cell anemia. A Swiss company, Modex Therapeutics, grows sheets of skin out of follicular stem cells. These are superior in every way to skin grafts, including price. It is striking that opponents of expanded federal funding for ESC research are repeatedly labeled religious fanatics, when the real fanaticism is on the part of the ESC boosters. The entire fuss over ESCs is precisely because private capital sees no short-term gain in them and instead is backing ASC research. Without those funds, ESC researchers and labs feel they have no choice but to hype the value of their work and understate or outright deny the value of ASCs in order to better their chance at feeding from the federal trough. Is ESC research immoral? I'm a science writer; that's not my ambit. But to the extent the ESC baloney takes away attention and funding from the far-more-promising ASCS, then immoral it is.

[Gary]

"I think stem cell harvesting and research . . . should be considered just as deserving of federal research funding as other potential recipients."

I disagree, J.

Even if we grant that the common good is advanced by public funding of such generally proven measures as immunization programs and floridation, it is questionable whether the federal government should be funding ANY wholly speculative research. The "promise" of embryonic stem cells, at least relative to cord and other stem cells, is not a promise at all; in fact, it barely qualifies as a hope. Equally valid arguments could be offered for federally-funded research into zero-point energy research or (here's a good one) funding Baptist researchers in the hunt for a prayer effective against those frequently uttered by terrorists.

If the first hurdle is passed and embryonic stem cell research is undeniably proven to offer real benefits (remember, at this point that's not at all assured) then we must face a second moral question, the deeply divisive issue of whether a human embryo is first of all "embryo," or first of all "human." Under the law, breaking the eggs of a condor is treated very much like killing an adult bird; in the US the attitude is widespread that human beings deserve similar protection to that afforded condors and leatherback turtles.

Federal funding of embryonic stem cell research violates all three of the fundamental principles of libertarianism and ought not to be promoted or defended, especially here.

[J]

Mona,

I didn't mean to imply that you were one of those fair weather small government types, just that they are playing a significant role in policy direction here.
If you already accept the idea that the government can legitimately have some role in funding research related to significant diseases, as I do and you're considering, I think the answer to your question lies in the relative importance you place on the medical aspect vs. the controversial aspect. I think the potential of embryonic stem cells for treating or curing some of these diseases (including the open question of their value relative to adult stem cells), is more convincing and important than the ethical arguments against it (mostly because I don't think the government should be determining ethics, as opposed to law). I'm morally doubtful on certain types of abortion, but I'm pro-choice legally/politically. I think stem cell harvesting and research is much less morally troubling than those types of abortion, and I think it should be considered just as deserving of federal research funding as other potential recipients.

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