Let Patients Decide

Face transplants are a great idea if someone can make them work.

Someone is trying.

The “ethicists,” part of whose problem is hubris and another part is conflict of interest (they have an incentive to promote their own role as decisionmakers), scoff:

“This idea needs more evaluation. What we do know either can’t be quantified or the risks clearly outweigh the benefits,” said Karen Maschke, the associate for ethics and science policy at the Hastings Center, a bioethics research institute in Garrison, N.Y. “Look, a lot of science is boosterism.

“People always think they’re going to be cured by new treatments and life will be normal again, but that’s usually not the case.”

But the creative surgeon has the right idea:

Dr. Siemionow disputes the notion that facially disfigured patients should not be allowed to decide the risks, asking, “How can people who are normal decide for burn victims ‘This is not right for you’?”

The patients know their own interests best. They should be the ones who decide what procedures, and risks, to subject themselves to.

Shannon’s “Left & Evolution” Revisited

Shannon’s earlier observations, “The Left & Evolution”, come to mind reading discussions at Volokh & Left2Right. Arguing about evolution seems a bit, well 19th century, but it is pretty easy to see that a certain pugnacious, literal, and irritating fundamentalism is matched by minds equally pugnacious and literal. The level of conversation at Volokh is pleasant. This also echoes Himmelfarb’s criticism of the French Enlightenment, where Reason replaces God, while the Brits & Americans see reason as a path to civic duty and liberty. While we should revere the “scientific method” and “scientific inquiry,” we may well suspect sentences that begin “Science says” and then judge the complexities of human motivation. Volokh quotes (none of the links work as far as I can see):

In March of 2001 the Gallup News Service reported the results of their survey that found 45 percent of Americans agree with the statement “God created human beings pretty much in their present form at one time within the last 10,000 years or so,” while 37 percent preferred a blended belief that “Human beings have developed over millions of years from less advanced forms of life, but God guided this process,” and a paltry 12 percent accepted the standard scientific theory that “Human beings have developed over millions of years from less advanced forms of life, but God had no part in this process.”

Well, I’m willing to agree that 45% is a pretty ridiculous (sad) percentage and does not bode well for America’s future in a world where broad science ability is important in terms of economics & defense. However, any one in that 12% who considers himself a beleaguered and martyred proponent of the truth must have an oversupply of chutzpah.

As long as polemicists insist that acceptance of science & evolution is bound up with acceptance of such a certainty, that 45% is not likely to become educated.

The State of Stem Cell Research

When President Bush announced his very federalist compromise to the stem cell research debate in 2001, I thought it was a pretty good move. Although I support stem cell research, I can accept that some people see it (or at least the branch dealing with embryonic stem cells) as a grave sin. I can even understand their position, although I don’t share it. The compromise simply made clear that the federal government would not fund research into embryonic stem cell research. It did not, however, limit adult stem cell research, nor state or private investment in embryonic stem cell research. Here is the meat of the policy recommendation in Bush’s remarks to the nation:

As a result of private research, more than 60 genetically diverse stem cell lines already exist. They were created from embryos that have already been destroyed, and they have the ability to regenerate themselves indefinitely, creating ongoing opportunities for research. I have concluded that we should allow federal funds to be used for research on these existing stem cell lines, where the life and death decision has already been made.

Leading scientists tell me research on these 60 lines has great promise that could lead to breakthrough therapies and cures. This allows us to explore the promise and potential of stem cell research without crossing a fundamental moral line, by providing taxpayer funding that would sanction or encourage further destruction of human embryos that have at least the potential for life.

I also believe that great scientific progress can be made through aggressive federal funding of research on umbilical cord placenta, adult and animal stem cells which do not involve the same moral dilemma. This year, your government will spend $250 million on this important research.

Now, with the new moves on Capitol Hill over the “Stem Cell Research Enhancement Act of 2005” (HR 810), the subject has again been brought to the fore. For my part, I supported California’s Proposition 71, which set aside $3 billion for 10 years to establish the California Stem Cell Research Institute. Since the subject matter was close to what I studied in college, and since the finances looked alright, I voted for it, despite my usual skepticism of government research, with the hope that government can serve as a leader, although by no means the sole player. Given that there is an “exit strategy” of sorts, perhaps those tapped to run the institute would feel more pressure to deliver the goods.

My only real beef with this is that the University of California is going to be involved. Their less-than-stellar record in recent years in managing the Los Alamos Nuclear Labs has gotten to the point where the University must now compete with private industry doesn’t reassure me. Still, private industry may yet take some cues, and then develop that beyond what the institute can do on its own.

In this spirit, a recent Wall Street Journal editorial painted a status commentary:

So what’s happened, research-wise, since 2001? Given the rhetoric of some of the President’s critics, you might think the answer is nothing. In fact, federal funding for all forms of stem-cell research (including adult and umbilical stem cells) has nearly doubled, to $566 million from $306 million. The federal government has also made 22 fully developed embryonic stem-cell lines available to researchers, although researchers complain of bureaucratic bottlenecks at the National Institutes of Health.

At the state level, Californians passed Proposition 71, which commits $3 billion over 10 years for stem-cell research. New Jersey is building a $380 million Stem Cell Institute. The Massachusetts Legislature has passed a bill authorizing stem-cell research by a veto-proof margin, and similar legislation is in the works in Connecticut and Wisconsin.

Then there’s the private sector. According to Navigant Consulting, the U.S. stem-cell therapeutics market will generate revenues of $3.6 billion by 2015. Some 70 companies are now doing stem-cell research, with Geron, ES Cell International and Advanced Cell Technologies being leaders in embryonic research. Clinical trials using embryonic stem-cell technologies for spinal cord injuries are due to begin sometime next year.

Hardly the sort of return to the Dark Ages that anti-Bush activists would have you believe.

Thus, the recent passage of the bill in Congress suggests that, having been given a chance to think about it, the public is indicating that it might just be worth it to allow embryonic stem cell research to be funded along with other sorts of stem cell research. The balance is still delicate, but there would appear to be an emerging lead in favor of de-restricting federal funding. The question then, of course, will become one of the wisdom of the funding. That is, how much of it will go toward work already done by private industry, thus culminating in an indirect subsidy?

First, though, the bill must get past the veto threat. I sincerely hope President Bush doesn’t exercise his veto here, but I wouldn’t get too worked up about it if he did.

[Cross-posted at Between Worlds]

Lancet Update

Via commenter AMac:

Tim Lambert has a new post that responds to some of Shannon’s arguments and takes me to task.

AMac himself posted this comment on Tim Lambert’s site, and I think summarizes well most of the important concerns about the Lancet piece. AMac is more cautious in his inferences than I would be, but I may be wrong and he may be right. He is generally thoughtful and fair-minded, and his contributions to the comment threads on this topic have been very helpful. I suspect that the data used in the Lancet study are of such low quality as to be of little practical use, but additional scrutiny of those data can’t hurt and should suggest ways in which future surveys could be improved.

UPDATE: AMac helpfully forwards some additional links in his comment below.

UPDATE 2: AMac provides this link to his latest and greatest post at WOC. Worth reading.