Monday, May 25, 2009

I Haz A Sad

Memorial Day has been a sad day for me since my older brother died a few years ago. He was in his early sixties and succumbed to complications from Alzheimer's, the same disease that killed our father. In my brother's case, it was the "early-onset" version of the disease, and it moved swiftly, probably accelerated by all the junk he was exposed to during multiple tours in Vietnam. A week after his military funeral (he was career Navy/Sea Bees), his first grandchild was born, a child he never got to hold.

That's one of the reasons I so desperately want stem cell research to continue and to thrive as promised by President Obama during his campaign. I was thrilled that Mr. Obama kept that promise by lifting the inane restrictions imposed by the last administration, but this morning I discovered that the ethical guidelines proposed by the National Institutes for Health will have the opposite effect.

...many proponents have concluded that the plan could have the opposite effect, putting off-limits for federal support much of the research underway, including work that the Bush administration endorsed. "We're very concerned," said Amy Comstock Rick, chief executive of the Coalition for the Advancement of Medical Research, which has been leading the effort to free up more federal funding for stem cell research. "If they don't change this, very little current research would be eligible. It's a huge issue."

The concern focuses on strict new ethics criteria that the National Institutes of Health has proposed. Advocates of stem cell research say that most of the work currently underway passed close ethical scrutiny but that the procedures varied and usually did not match the details specified in the proposed new guidelines.

"It's not that past practices were shoddy," said Lawrence S. Goldstein, director of the stem cell program at the University of California at San Diego. "But they don't necessarily meet every letter of the new guidelines moving forward. We'd have to throw everything out and start all over again."
[Emphasis added]

Here's one of the problems: the new guidelines are meant to be retroactive. They affect existing research because the rules now being suggested weren't met in precisely the way the rules require, especially when it comes to using stem cell lines from discarded fertility clinic embryos:

The guidelines, for example, require that the documents that couples sign when they agree to donate their embryos for research specify that they were fully informed of other options, such as donating their embryos to other couples instead. Although many clinics offered couples such options, that information was not usually laid out in detail in the written consent forms.

"That information might have been presented in another document. It might have been discussed with the couple but not written," said Sean J. Morrison, director of the University of Michigan Center for Stem Cell Biology. "But it wasn't necessarily written in the consent document itself."

No one is certain exactly how many stem cell lines exist or how many would comply with the requirements in the guidelines. But a review of the 21 lines that Bush had approved indicates that perhaps just two would be eligible, and that most of the hundreds of others created since then would fall short, Daley and others said.

"If applied retroactively, the proposed guidelines would render ineligible most stem cell lines," said Patrick L. Taylor, deputy counsel at the Boston Children's Hospital, who critiqued the proposed NIH guidelines in a paper published online May 14 in the journal Cell Stem Cell.

In other words, the research of the past eight years would have to be chucked out and researchers would have to start all over again. That makes me crazy.

Do I think it was deliberate on the part of President Obama? Of course not. He has made it clear in all sorts of ways that he intends his administration to support real science, and his actions the past four months are evidence that he is serious in that intention.

I believe that what has happened here is that he has been overly sensitive to the pressure brought by the religious conservatives who want all stem cell research stopped because it requires the destruction of a cluster of embryonic cells. The rules as described in the cited article certainly accomplish that, even if that was not the original intent.

Fortunately, the rules are still in the public comment phase, and the scientific community has weighed in heavily. Hopefully NIH will heed the comments from that community and will redraw the rules so that the past eight years will not be thrown out. We've waited too long for the breakthroughs that research will bring.

It might be too late for my sister and I, should that familial disease hit either of us, but I've got a niece and four nephews who deserve better.

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