The Juvenile Diabetes Research Foundation required families coming to Washington for the group’s convention last month to promise not to express disagreement with the group’s stance in favor of expanding embryonic stem-cell research.
The group’s application for families attending their biennial Children’s Congress in Washington last month included the following language: “if there is discussion of such controversial topics as embryonic stem-cell research, I will either embrace the JDRF legislative position on such topics or will not work against the JDRF position.”
Several House Republicans angrily complained, saying the group was silencing families.
“We find it deeply disturbing that your organization would go to the extent of silencing participants who may object to embryonic stem-cell research on moral or scientific grounds,” read a June 23 letter signed by 18 House Republicans, including Reps. Dave Weldon of Florida, Joe Pitts of Pennsylvania and Todd Akin of Missouri.
“The above statement clearly calls for applicants to be willing to embrace ethically questionable research or be willing to muzzle their personal beliefs and moral convictions,” said the letter, a copy of which was obtained this week by The Washington Times.
The lawmakers called the language a “loyalty oath” and asked JDRF to remove it.
JDRF’s Peter Van Etten responded in a July 12 letter, saying “there is no loyalty oath,” and no families have complained about the application.
The form covers numerous technical details and is part of an effort to “make sure that delegates and their families, before attending, are comfortable with publicly discussing the devastating complications of diabetes in front of their young children, or ’controversial topics’ such as stem-cell research (the example given in the application), clinical trials of drugs in children, or research using animal models.”
The group sponsored 150 children with juvenile diabetes and their parents to come to Washington and visit their lawmakers’ offices, raising awareness of the disease and urging them to fight for a cure. The event has been held every other year since 1999.
But Mr. Weldon said Mr. Van Etten’s letter “is as deceptive as the methods they use to lobby Congress.” He said the group “didn’t answer my question” about removing the language and didn’t explain the reason for it.
Peter Cleary, JDRF’s lead spokesman, said yesterday families can say whatever they want, but the language simply encourages them to use their brief time with lawmakers to push increased funding and awareness of the disease, and not to focus on areas where they might disagree with JDRF.
Application language for the next Congress will be reviewed in about a year, he said, and if families complain, JDRF will consider changing it.
Mr. Weldon said JDRF is being deceptive by pushing embryonic stem-cell research as the way to cure juvenile diabetes, when that approach is far from proven. The group downplays other avenues such as adult stem-cell and cord blood research, which are proving to be more effective, he said.
JDRF is fighting to expand President Bush’s 2001 embryonic stem-cell policy, and bills itself as “the unequivocal leader of advocacy” for such research since 1998.
But Mr. Cleary said it’s “patently incorrect” to say JDRF focuses on that alone, because last year it spent $4.5 million on embryonic stem-cell research and $2.5 million on adult stem-cell research, as well as millions more on other types of research.
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