Responses, some poignant, to NIH stem-cell draft

WASHINGTON

Although many of the more than 49,000 comments received by the National Institutes of Health on their draft guidelines for embryonic stem-cell research are repetitive, some offer a poignant glimpse into the lives of Americans who don't want to see embryos destroyed in an effort to cure diseases.

"As a mother of a child with juvenile diabetes, I certainly hope we find a cure for this terrible disease in her lifetime," wrote one woman. "However, I am not willing to sacrifice the life of ONE CHILD, let alone thousands or even more in the name of research.

"Killing an embryo in the name of research is just as wrong as killing an adult or a newborn baby in the name of research," she added.

A young man who'd had diabetes since he was 2 and recently went blind from it seemed to want merely to tell his own story.

Talking about current research on blind rats, he said, "That is nice and all but seriously I don't care either way if blind rats can see or not, call me coldhearted. It's just that rats don't hold down jobs. Sure, as a blind person I can get a job. I'll get right on it as soon as I relearn how to perform all of the other tasks I used to take for granted, like the simple act of walking out the front door and crossing the road. Maybe some of the money used to conduct research on rats could be used to treat people."

The NIH published on its Web site at http://grants.nih.gov/stem_cells/web_listing.htm most of the 49,015 comments it received on the draft guidelines during a monthlong comment period that ended May 26. The agency eliminated all personal information from the comments and left out about 60 comments deemed "inappropriate" because they contained spam or "offensive language."

See our earlier story: Cardinal criticizes expanded NIH funding rules for stem-cell research.

Dr. Raynard S. Kington, acting NIH director, announced final guidelines July 6 that broadened the funding criteria in the draft to include research involving embryos donated before the new guidelines took effect or involving stem-cell lines developed in foreign countries, in addition to research on embryos created for reproductive purposes at in vitro fertilization clinics and no longer needed for that purpose.

Kington said about 30,000 of those making comments were opposed to the use of federal funds for embryonic stem-cell research. But he said those comments were disregarded because they were "deemed not responsive to the question put forth," which he said was how to make such funding, not whether to make it.

But that did not keep people from stating their objections to embryonic stem-cell research, in a wide variety of ways.

One sent along a poem called "Operation Creation: The Eve of Man's Manipulation." Its last verse read: "So slipping down the slope we go/To the deep abyss below/Design a mind, create a face/A polished, finished human race."

Another likened his opposition to the torture issue: "Just as the issue of torture should be framed by what is morally right instead of what is most effective, so the issue of stem-cell research should be framed on those same terms. Please give our children a legacy of caring for life instead of destroying it that the United States may regain a moral high ground."

One urged a reading of the Dr. Seuss book "Horton Hears a Who" and that attention be paid to its "underlying message: 'A person's a person no matter how small.' This responsibility needs to be taken very seriously if our leaders don't want to someday stand before God with the blood of children on their hands."

Another compared certain technological "advances" to the Nazi experiments under Adolf Hitler: "Shame on this country for going the road of Nazi Germany in doing experimentation on human life. The success with adult stem cells far outpaces the proclivity of cancer from using embryonic stem cells. Hooray for the future of the perfect human!!"

Hundreds of the letters contained identical messages and seemed to have been generated from one of three sources -- the Juvenile Diabetes Research Foundation, the Genetics Society of America or the U.S. Conference of Catholic Bishops and its affiliated organizations.

As one opponent of embryonic stem-cell research said, "These things are copied and pasted because I'm at work and don't have time to write basically the same thing in a different way. I agree with all of these things and feel that they need to be rectified ASAP."

The writers using language from the diabetes foundation began their comments with the words, "For those of us with a personal connection to type 1 diabetes, these actions have renewed our hope for a cure."

But not every supporter of the diabetes foundation backed the foundation's stand on embryonic stem cells.

"I think adult and cord stem cells is fine. But PLEASE stay away from the embryonic stem cells," wrote one person. "There are many of us who support the JDRF but do not support embryonic stem-cell research. Do not disregard those of us who are pro-life!"