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TESTIMONY TRANSCRIPT

HEARING before the SUBCOMMITTEE ON CRIMINAL JUSTICE, DRUG POLICY AND HUMAN RESOURCES of the COMMITTEE ON GOVERNMENT REFORM HOUSE OF REPRESENTATIVES ONE HUNDRED SEVENTH CONGRESS FIRST SESSION JULY 17, 2001

….We will now hear from Mollie and Jackie Singer.

Ms. Mollie Singer: I want to thank you for giving us the opportunity to speak today. My name is Mollie Singer and this is my twin sister, Jackie. Eight years ago, I was diagnosed with juvenile diabetes, and ever since then, I worry that my sister will get this terrible disease. So far, I have had 21,000 shots and 28,000 finger pokes. At age 5, I had open- heart surgery which was made harder because of my diabetes. Because of all these problems I've had, I worry about my future and I don't want Jackie or anyone to go through what I've been through. We need to do something to stop it. Please support the NIH Guidelines for Embryonic Stem Cell Research. Now my sister, Jackie, would like to say a few words. Ms. Jackie Singer: Since Mollie was 4 years old, I've watched her struggle with her diabetes. It's so hard. For more than half our lives, we have visited our Representatives in Washington, DC, to ask them to support diabetes research. We have helped raise over $75,000 for research. We have written letters to President Bush. We have visited the National Institutes of Health to see research laboratories and speak with Dr. Spiegel and Dr. Harlan. We have done all this to help cure diabetes, but it still isn't cured. Mollie may look normal, but her disease is very hard on her body. All Mollie wants is to live a normal, healthy life, and embryonic stem cell research is our best hope. Ms. Mollie Singer: Last week we wrote a letter to President Bush to tell him our thoughts about embryonic stem cell research. I'd like to read this letter to you now. Dear President Bush,     We hadn't planned on writing you so soon, but this morning we were watching the news and we heard about the people in Virginia who made embryonic stem cells in the laboratory. We were so upset, we couldn't believe that they made cells just so they could be destroyed. We must be very naive because we never thought someone would do something like this. So we asked mom how this could happen and she explained that right now it is legal, but that she is completely against this type of research and so is the Juvenile Diabetes Research Foundation.     We feel so bad, because for a long time we have asked you to help us and to support embryonic stem cell research, but we never meant like this. Our family is Catholic and we have prayed and asked God to help us know what is right and what is wrong about embryonic stem cell research. We always thought it was wrong to make embryos, especially when they did it for no other reason than to destroy them.     But we also believe it is just as bad to treat the embryos that already exist as though they are worthless. Because embryos are so special, embryonic stem cells should be allowed to have meaning. We should respect them and value them, and we shouldn't be wasting such a special gift. If these cells will never be able to become a human life, then maybe the most moral thing to do is find out if these cells can save lives rather than simply throw them out. Whenever we have difficult decisions to make, we usually ask WWJD, ``what would Jesus do,'' and we don't believe that Jesus would ever waste a gift from God.     We never talked to you or anyone about how much we know about stem cell research, so most people think that because we are only 12 that we couldn't possibly understand the moral and medical issues that are involved, but we do understand. We are devout Catholics and have had many conversations with our family and parish priest about this subject. Also, for the past few years we have visited research laboratories, including NIH, and have talked for hours with quite a few well-known researchers. We have listened to many knowledgeable and respected people on this subject and, above all, we have prayed for guidance.     President Bush, we don't want you to see our picture or think of us and somehow associate the support we asked for with the researchers who created their own embryos. Yes, we want you to remember us when you make your decision. But, when that time comes, we want you to know that we, along with all the other people who desperately want to cure their diseases, are talking about the embryos that already exist, not the embryos created by scientists.     At the beginning of this year and as a result of what we have learned, we finally made the decision to support embryonic stem cell research, but only the ones that are in existence and that will be destroyed after a few years. We can only imagine how difficult this decision is for you, but it helps us to know that someone as wise as you are was chosen to make this decision. At least we can be sure that you will do what you honestly believe is for the greater good and in the best interest of all the people.     As always, we will keep you and your family in our prayers.

And we signed our letter, ``Love, Mollie and Jackie.''

Ms. Jackie Singer: Please help us. I don't want Mollie to go blind. I don't want Mollie to have kidney failure. I don't want Mollie to have a heart attack or stroke. I want Mollie to live. Please support embryonic stem cell research and give the researchers the opportunity to cure diabetes. Thank you for listening to us.

________

Bush: Stem-Cell Issue Goes Beyond Politics

W A S H I N G T O N, July 19

By Carter M. Yang

Under immense pressure to decide whether to fund embryonic stem-cell research, President Bush said today the controversial issue goes "way beyond politics."

'This Is Way Beyond Politics,' Says Bush

"This is an issue that speaks to morality and science and the just position of both," the president said at a news conference in London, where he began his second European tour in as many months. "Americans deserve a president who will listen to people and to make a serious, thoughtful judgment on this complex issue."

The issue is biomedical research that scientists say could lead to cures for debilitating diseases like diabetes, Parkinson's and Alzheimer's, but that Roman Catholic Church leaders and many anti-abortion rights conservatives say is immoral because it uses cells extracted from human embryos, which are destroyed in the process.

"It doesn't matter who's on what side, as far as I'm concerned," Bush said. "This is way beyond politics."

But as the president nears a decision on federal funding, an emotionally charged debate has raged on Capitol Hill.

"This is not an abstract issue — it's about saving the lives of millions of human beings," Sen. Tom Harkin, D-Iowa, said Wednesday as he chaired a hearing on stem-cell research. "It is imperative that the federal government support this research."

"Forcing U.S. taxpayers to subsidize research that relies on deliberate destruction of human embryos for their stem cells is illegal, immoral and unnecessary," countered Richard Doerflinger, an associate director at the National Conference of Catholic Bishops.

Both Sides Enlist Children in Emotional Appeals

With administration officials saying Bush is genuinely "conflicted" and is "agonizing" over his decision, each side has vied for the president's conscience, enlisting children in an effort to put a human face on their cause.

At a news conference on Capitol Hill Wednesday, 12-year-old Jackie Singer of Las Vegas pleaded for government funding, saying the research could help her twin sister, Mollie, who suffers from juvenile diabetes.

"I don't want Mollie to go blind, I don't want her to have kidney failure, and I don't want her to have a heart attack or a stroke." Jackie said. "All Mollie wants to do is live a normal, healthy life, and embryonic stem-cell research is our best hope."

A day earlier, as he testified at a House subcommittee hearing, John Borden of Fontana, Calif., stood cradling his 9-and-a-half-month-old twins Mark and Luke, who were adopted as frozen embryos, and asked: "Which one of my children would you kill? Which one would you choose to take?"

Democrats and moderate Republicans who support abortion rights are nearly unanimous in their support for government funding. But the ranks of stem-cell research supporters also include a handful of GOP lawmakers who, like the president, are staunchly opposed to abortion.

Key GOP Lawmaker Signals Support

On Wednesday, that list grew by one as Sen. Bill Frist, R-Tenn., the Senate's only physician and a close ally of the White House declared his support for federally funded embryonic stem-cell research.

But White House counselor Karen Hughes said today that Frist's surprise announcement should not be viewed as an indication that the president has made his decision.

"The president will make his own decision," the longtime Bush adviser told ABCNEWS' Good Morning America. "I don't think people should read anything into anything that anyone else says."

The president had been expected to make his decision as early as last week, but White House aides and Bush himself now say he will take his time as he weighs the issue.

"This is a very serious issue that has got a lot of ramifications," Bush said today. "I want to hear all sides. I want to fully understand the opportunities and to fully think through the dilemmas."

The president has been hearing plenty from those in both camps, having met privately with leading experts on biomedical ethics, anti-abortion rights advocates and representatives of people with various diseases who could be helped by the research. He also has received letters from dozens of members of Congress urging him to approve or cut off funding for the controversial studies.