OPPORTUNITIES AND ADVANCEMENTS IN STEM

CELL RESEARCH

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

Serial No. 107–38

Printed for the use of the Committee on Government Reform

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Available via the World Wide Web: http://www.gpo.gov/congress/house

http://www.house.gov/reform

OPPORTUNITIES AND ADVANCEMENTS IN STEM CELL RESEARCH

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OPPORTUNITIES AND ADVANCEMENTS IN STEM

CELL RESEARCH

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

Serial No. 107–38

Printed for the use of the Committee on Government Reform

(

Available via the World Wide Web: http://www.gpo.gov/congress/house

http://www.house.gov/reform

(II)

COMMITTEE ON GOVERNMENT REFORM

DAN BURTON, Indiana, Chairman

BENJAMIN A. GILMAN, New York

CONSTANCE A. MORELLA, Maryland

CHRISTOPHER SHAYS, Connecticut

ILEANA ROS-LEHTINEN, Florida

JOHN M. MCHUGH, New York

STEPHEN HORN, California

JOHN L. MICA, Florida

THOMAS M. DAVIS, Virginia

MARK E. SOUDER, Indiana

JOE SCARBOROUGH, Florida

STEVEN C. LATOURETTE, Ohio

BOB BARR, Georgia

DAN MILLER, Florida

DOUG OSE, California

RON LEWIS, Kentucky

JO ANN DAVIS, Virginia

TODD RUSSELL PLATTS, Pennsylvania

DAVE WELDON, Florida

CHRIS CANNON, Utah

ADAM H. PUTNAM, Florida

C.L. ‘‘BUTCH’’ OTTER, Idaho

EDWARD L. SCHROCK, Virginia

JOHN J. DUNCAN, Tennessee

HENRY A. WAXMAN, California

TOM LANTOS, California

MAJOR R. OWENS, New York

EDOLPHUS TOWNS, New York

PAUL E. KANJORSKI, Pennsylvania

PATSY T. MINK, Hawaii

CAROLYN B. MALONEY, New York

ELEANOR HOLMES NORTON, Washington,

DC

ELIJAH E. CUMMINGS, Maryland

DENNIS J. KUCINICH, Ohio

ROD R. BLAGOJEVICH, Illinois

DANNY K. DAVIS, Illinois

JOHN F. TIERNEY, Massachusetts

JIM TURNER, Texas

THOMAS H. ALLEN, Maine

JANICE D. SCHAKOWSKY, Illinois

WM. LACY CLAY, Missouri

DIANE E. WATSON,California

——— ———

———

BERNARD SANDERS, Vermont

(Independent)

KEVIN BINGER, Staff Director

DANIEL R. MOLL, Deputy Staff Director

JAMES C. WILSON, Chief Counsel

ROBERT A. BRIGGS, Chief Clerk

PHIL SCHILIRO, Minority Staff Director

SUBCOMMITTEE ON CRIMINAL JUSTICE, DRUG POLICY AND HUMAN RESOURCES

MARK E. SOUDER, Indiana, Chairman

BENJAMIN A. GILMAN, New York

ILEANA ROS-LEHTINEN, Florida

JOHN L. MICA, Florida,

BOB BARR, Georgia

DAN MILLER, Florida

DOUG OSE, California

JO ANN DAVIS, Virginia

DAVE WELDON, Florida

ELIJAH E. CUMMINGS, Maryland

ROD R. BLAGOJEVICH, Illinois

BERNARD SANDERS, Vermont

DANNY K. DAVIS, Illinois

JIM TURNER, Texas

THOMAS H. ALLEN, Maine

——— ———

EX OFFICIO

DAN BURTON, Indiana HENRY A. WAXMAN, California

CHRIS DONESA, Staff Director

ROLAND FOSTER, Professional Staff Member

CONN CARROLL, Clerk

JOSHUA SHARFSTEIN, Minority Professional Staff Member

(III)

C O N T E N T S

Page

Hearing held on July 17, 2001 ............................................................................... 1

Statement of:

Salley, Nathan, leukemia patient; Mollie Singer, Juvenile Diabetes Research Foundation; Jackie Singer, Juvenile Diabetes Research Foundation; Joan Samuelson, Parkinson’s Action Network; David A. Prentice,

professor of life sciences, Indiana State University, and adjunct professor of medical and molecular genetics, Indiana University School of

Medicine; C. Christopher Hook, MD, Mayo Clinic; and Gerald D.

Fischbach, MD, dean of the faculty of medicine, Columbia University ... 97

Strege, Marlene; Lucinda Borden; John Borden; and Jo Ann L. Davidson,

Christian Adoption and Family Services .................................................... 39

Letters, statements, etc., submitted for the record by:

Borden, Lucinda, prepared statement of ........................................................ 52

Cummings, Hon. Elijah E., a Representative in Congress from the State

of Maryland, prepared statement of ............................................................ 9

Davidson, Jo Ann L., Christian Adoption and Family Services, prepared

statement of ................................................................................................... 74

Fischbach, Gerald D., MD, dean of the faculty of medicine, Columbia

University, prepared statement of ............................................................... 105

Hatch, Hon. Orrin G., a Senator in Congress from the State of Utah,

prepared statement of ................................................................................... 16

Hook, C. Christopher, MD, Mayo Clinic, prepared statement of .................. 178

Maloney, Hon. Carolyn B., a Representative in Congress from the State

of New York, prepared statement of ........................................................... 31

Prentice, David A., professor of life sciences, Indiana State University,

and adjunct professor of medical and molecular genetics, Indiana University School of Medicine, prepared statement of .................................... 111

Salley, Nathan, leukemia patient, prepared statement of ............................ 100

Samuelson, Joan, Parkinson’s Action Network, prepared statement of ...... 159

Schakowsky, Hon. Janice D., a Representative in Congress from the

State of Illinois, prepared statement of ...................................................... 26

Singer, Mollie and Jackie, Juvenile Diabetes Research Foundation, prepared statement of ........................................................................................ 169

Smith, Hon. Chris, a Representative in Congress from the State of New

Jersey, prepared statement of ...................................................................... 36

Souder, Hon. Mark E., a Representative in Congress from the State

of Indiana, prepared statement of ............................................................... 4

Strege, Marlene, prepared statement of ......................................................... 41

Waxman, Hon. Henry A., a Representative in Congress from the State

of California, prepared statement of ........................................................... 21

(1)

OPPORTUNITIES AND ADVANCEMENTS IN

STEM CELL RESEARCH

TUESDAY, JULY 17, 2001

HOUSE OF REPRESENTATIVES, SUBCOMMITTEE ON CRIMINAL JUSTICE, DRUG POLICY AND

HUMAN RESOURCES, COMMITTEE ON GOVERNMENT REFORM, Washington, DC.

The subcommittee met, pursuant to notice, at 2:05 p.m., in room

2154, Rayburn House Office Building, Hon. Mark E. Souder (chairman of the subcommittee) presiding.

Present: Representatives Souder, Gilman, Mica, Ose, Jo Ann

Davis of Virginia, Weldon, Cummings, Blagojevich, Allen, and

Schakowsky.

Also present: Senator Hatch, and Representatives Burton, Lewis

of Kentucky, Smith of New Jersey, Waxman, and Maloney.

Staff present: Chris Donesa, staff director; Roland Foster, professional staff member; Conn Carroll, clerk; Conor Donahue, intern;

Sarah Despres and Tony Haywood, minority counsels; Ellen

Rayner, minority chief clerk; Earley Green, minority assistant

clerk; Lorran Garrison, minority staff assistant; Joshua Sharfstein,

minority professional staff member; and Piper Nieters, intern.

Mr. SOUDER. The subcommittee will come to order.

Good afternoon, and thank you all for being here today.

Today’s hearing will examine the opportunities presented with

stem cell research, the ethical questions involved, as well as some

of the issues that thus far have been largely overlooked.

Before we begin, I would like to thank three people in this room

who are here on behalf of thousands of other children in this country. Hannah, Luke, and Mark are too young to understand their

impact on the debate currently before this body, but their presence

is truly a reminder that every child, every life is precious.

This is a principle understood by the Founders of our great Nation, who found that, ‘‘all men are created equal, that they are endowed by their Creator with certain unalienable rights, that among

these are life, liberty, and the pursuit of happiness.’’ It is a principle I hope will guide this hearing, guide this body, and guide our

President as we examine the issues of human life and science that

are before us today.

Stem cells, only relatively recently discovered, are the fundamental building blocks for all the tissues in the body. Stem cells are

believed to offer science perhaps the greatest potential for uncovering treatments and cures for some of the most devastating diseases

that afflict millions of Americans. In fact, in the short time since

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these cells have been discovered, stem cells have already been used

to successfully treat patients for a number of conditions, including

stroke, cancer, arthritis, and leukemia.

Some would have us believe that these and other potential cures

can only occur if the Federal Government approves and provides

funding for research on stem cells derived from destroying living

human embryos. This is a false assumption.

In September 1999, the National Bioethics Advisory Commission

issued a statement entitled, ‘‘Ethical Issues in Human Stem Cell

Research,’’ which concluded:

‘‘In our judgment, the derivation of stem cells from embryos remaining following infertility treatments is justifiable only if no less

morally problematic alternatives are available for advancing the research . . . The claim that there are alternatives to using stem

cells derived from embryos is not, at the present time [9/99], supported scientifically. We recognize, however, that this is a matter

that must be revisited continually as the demonstration of science

advances.’’

Scientists now know that embryos are not the only source of

stem cells. Every one of us, it turns out, holds an unknown amount

of stem cells that can be derived without harm or injury. ‘‘Adult’’

stem cells capable of transforming into countless cell and tissue

types have been located throughout the human body, including in

the brain, muscles, blood, placentas, and even in fat. Researchers

have only begun to unlock the potential of these adult stem cells.

Stem cells from fat have been transformed into cartilage, muscle,

and bone. Adult bone marrow stem cells have been transformed

into muscle, cardiac tissues, neural cells, liver, bone, cartilage, and

fat. And just this May, researchers announced that they had identified an adult cell that appears capable of becoming virtually any

cell in the body.

Contrary to the impressions created by advocates for embryonic

stem cell research, the potential of such cells remains entirely speculative, because embryonic stem cells have never been successfully

used in clinical applications with human patients. Lost in the debate is the fact that all of the clinically successful human applications of stem cells to date have been conducted with adult stem

cells. Today we will hear from one patient, Nathan Salley, who has

successfully been treated for leukemia with stem cells from cord

blood.

One of the few successes scientists have achieved using embryonic stem cells has been the apparent conversion of such cells into

insulin-producing pancreatic islet cells in mice. Yet the mouse embryonic stem cell work merely replicates an advance made with

adult stem cells over a year earlier. However, the mouse embryonic

stem cells secreted only one-fiftieth the normal amount of insulin,

and diabetic mice implanted with the cells still died. In contrast,

scientists using adult stem cells achieved full insulin expression

from their differentiated adult stem cells, including full ability to

protect from diabetes once transplanted back into the mice. There

is no reason, therefore, to believe that adult stem cells do not have

the same—if not greater—potential than stem cells derived from

embryos.

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In a review of the available science on stem cells compiled for

HHS Secretary Tommy Thompson, the National Institutes of

Health admits, ‘‘an urgent question in stem cell research today is

whether stem cells in adult tissues have the same capacity to proliferate and differentiate as do embryonic stem or germ cells.’’ Before the U.S. Government condones with Federal funding research that results in the destruction of living human embryos, we

have a moral obligation to explore and exhaust every available ethical alternative. We are fortunate that such alternatives are plentiful and have already yielded great successes.

This is not to say that the so-called ‘‘spare’’ embryos at fertility

clinics across the country cannot serve a useful purpose. Today we

will hear how these ‘‘leftover’’ embryos have brought hope and joy

to a number of childless families. Who can argue young Hannah,

Mark, and Luke, who we see before us today—adopted as embryos—would have been better left to research than to be allowed

to fulfill their gift of life?

There is no question that stem cell research is a complex issue,

and understanding and the oversight of such research is limited.

Even without government sponsorship, research on stem cells derived from killing human embryos has occurred and continues. In

fact, just last week a group of scientists in Virginia announced that

they have created living human embryos solely for the purpose of

destroying them for their stem cells. Days later, a Massachusetts

company announced that it is attempting to clone human embryos

for stem cell research.

We all desperately want to find cures for the diseases that affect

our friends, our families, and our neighbors. Yet, in our quest to

find these cures, we must not ignore or rationalize the tremendous

moral questions posed by destroying living human embryos. Neither should we overlook all the ethical alternatives that exist that

do not require the taking of one’s life in order to improve the life

of another.

Thank you all for being here today, and I look forward to your

testimony.

[The prepared statement of Hon. Mark E. Souder follows:]

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Mr. SOUDER. Now I yield to the ranking member, Mr. Cummings.

Mr. CUMMINGS. Thank you very much, Mr. Chairman.

With technological advances come new possibilities, new hopes,

and new challenges. The issue of Federal funding for embryonic

stem cell research raises ethical questions of first impression. Obviously, there are strongly held, good-faith arguments on both sides

of this issue. Opponents of embryonic stem cell research argue that

many questions remain about whether this research will benefit

patients anytime soon. This is true. But it is equally important to

remember that there are some things we do know.

We know that top scientists believe that embryonic stem cells

may lead to breakthrough treatments for devastating disorders affecting countless American families. These cells offer hope to thousands of children who suffer paralyzing spinal cord injuries each

year. They may someday alleviate the suffering of 1 in every 100

Americans over the age of 65 afflicted with Parkinson’s disease.

Embryonic stem cells have also shown enormous promise in animal

models for the treatment and potential cure of diabetes, a disease

that threatens the health of millions of children and adults in our

country each year.

The National Institutes of Health reported in June to President

Bush, ‘‘The discovery of methods to isolate and grow human embryonic stem cells in 1998 renewed the hopes of doctors, researchers,

and diabetes patients and their families that a cure for Type I diabetes, and perhaps Type II diabetes as well, may be within striking

distance.’’ We also know that alternatives to embryonic stem cells have significant limitations. Adult stem cells, for example, are difficult for

scientists to find and do not thrive in culture as well as an embryonic stem cell. Umbilical cord stem cells also show promise, but, according to the National Institutes of Health report to President

Bush, top scientists do not consider their use a satisfactory substitute for embryonic cells.

Whether or not the Federal Government funds research using

embryonic stem cells, that research is certain to proceed in the private sector. As William Safire put it in a recent New York Times

op-ed, ‘‘The stem cell genie is out of the research bottle. Whether

driven by private funds here or by the investment of money by foreign governments,’’ Safire writes, ‘‘embryonic cells will be used to

achieve breakthroughs to cures.’’

A recent reminder of this came in the form of news reports about

the controversial research of the Jones Clinic in which embryos,

perhaps for the first time, were cultivated for the specific purpose

of conducting stem cell research. This highlights another important

consideration; namely, that the Federal research would be subject

to rules that do not exist in the private sector. Indeed, the advent

of Federal funding for embryonic stem cell research would attract

many of the best and most responsible scientific voices and minds

to this important area of inquiry.

If, on the other hand, the Bush administration upholds a ban on

Federal funding, many scientists who receive Federal funding for

other research would face substantial obstacles to participation in

this critical research. Indeed, allowing Federal funding may have

the welcome effect of concentrating research in the hands of reVerDate 11-MAY-2000 11:24 Mar 26, 2002 Jkt 000000 PO 00000 Frm 00015 Fmt 6633 Sfmt 6633 C:\DOCS\77248.TXT HGOVREF1 PsN: HGOVREF1
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searchers who will be subject to Federal guidelines that are designed to promote scientific ethics and public accountability. Such

research would be conducted in the light of day, subject to public

scrutiny, and by the best scientific minds.

Excluding federally funded scientists, by contrast, excludes many

of the best minds in the field from working on some of the most

challenging scientific questions that may very well yield cures or

effective treatments to some of the diseases I’ve indicated. Moreover, destruction is the ultimate fate of thousands upon thousands

of in vitro embryos, regardless of whether they are used for research. Under NIH guidelines, only embryos already slated for destruction and obtained with a doctor’s consent, only after they have

decided not to implant them, would be eligible for use in federally

funded research. It is ironic that the fate of these embryos has become a focus of intense public attention because of efforts to ensure

that some benefit comes from their creation.

Embryonic stem cell research conducted according to Federal

guidelines would in no practical sense result in the deprivation of

life. It holds a very real promise, however, of saving, extending,

and improving the quality of tens of millions of lives affected by

some of the most debilitating and dangerous human diseases and

disabilities.

Now that the genie is out of the bottle, Mr. Chairman, the question before us is quite simply whether the U.S. Government will

take the lead in guiding this research along a well-designed, scientific and ethical path. I hope that my House and Senate colleagues and President Bush will bear these considerations in mind

as the debate on this important subject proceeds.

I look forward to hearing the testimony of our witnesses today.

[The prepared statement of Hon. Elijah E. Cummings follows:]

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Mr. SOUDER. Next I would like to yield to one of the most distinguished Members of the U.S. Senate, and certainly one of the leaders in the health area. Though we don’t agree on this particular

issue, when I was first married, I sent financial support, while we

were scraping for every little dollar, to three candidates in the

United States, and he was one of them, even though I lived in Indiana, and I have a tremendous respect for him, whether we agree

or disagree on the nuances of this issue. He has been a leader in

health care, and it’s a great honor to introduce Senator Orrin

Hatch.

Senator HATCH. Well, thank you, Mr. Chairman. That’s so nice

of you, and I appreciate it very much. Thank you for holding this

important hearing today. It will yield a much-needed and very valuable perspective to the debate around stem cells. I also appreciate

your accommodating my schedule, and I am very grateful to be

with all of you distinguished Members of the House here today.

With your permission, I will summarize my remarks and submit

my longer statement for the record.

First, let me recognize the important work this committee and

this subcommittee are doing. Mr. Chairman—or should I say, ‘‘Mr.

Chairmen’’—you have developed this panel into a real power center

in the House.

I would also be remiss if I did not recognize my old friend and

ally—well, sometimes ally—Representative Waxman. Henry and I

have collaborated on some of the most important public health legislation enacted. We have also been on opposing sides more than

once, and I have to say I prefer working with you rather than

against you, Henry.

Let me make clear at the outset that I consider myself to be

strongly pro-life. I am vigorously opposed to abortion, and I always

have been and always will be. The theme of your hearing today is

that there are alternatives to embryonic stem cell research such as

adult stem cell research or adoption of embryos. The lovely children

and their families who have traveled here today prove that there

can be good alternatives. By all means, let these good alternatives

proceed.

But I also think we would be making a critical mistake if we

were to shut off the avenue of research that scientists have found

to be the most promising at this point, embryonic stem cell research. Over the past months I have devoted countless hours of

study to this important issue, reflecting on my spiritual teachings,

the law, the science, and the ethical issues presented by embryonic

stem cell research. My conclusion was that the support of embryonic stem cell research is consistent with pro-life and pro-family

values. This research holds out promise for improving and extending life for more than 100 million Americans suffering from a variety of diseases, including heart disease, Parkinson’s, Alzheimer’s,

ALS, multiple sclerosis, cancer, and diabetes.

I recognize that there are some whose very heart-felt feelings

cannot allow them to agree with this conclusion. It is my fervent

hope that we can find an acceptable middle ground which will help

all of us feel more comfortable about pursuing promising stem cell

research.

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Mr. Chairman, to me the most compelling fact is that with the

in vitro fertilization process it is inevitable that extra embryos are

created, embryos that simply will not be implanted in a mother’s

womb. As these embryos sit frozen in a test tube outside the womb

under today’s technology, there is no chance for them to develop

into a person. While I think we definitely should consider ways to

foster adoption of embryos, there are a host of issues associated

with this—legal, religious, privacy, and public health—which must

be developed fully. While those issues are being considered, the reality today is that each year thousands of embryos are routinely destroyed. Why shouldn’t these embryos slated for destruction be

used for the good of mankind?

While I understand that others in the pro-life community will

disagree with me, I believe that a human’s life begins in the womb,

not a petri dish or a refrigerator. It is inevitable that in the IVF

process extra embryos are created that simply will not be implanted in a mother’s womb. To me the morality of this situation

dictates that these embryos, which are routinely discarded, be used

to improve and extend life. The tragedy would be in not using these

embryos to save lives when the alternative is that they will be slated for destruction. Yes, by all means, pursue adoption of the embryos where this is feasible, but allow strictly regulated research

to be pursued for those embryos which cannot be adopted, embryos

which most certainly will be discarded.

Before I close, I would like to comment on the work of the Jones

Institute for Reproductive Medicine in Norfolk, Virginia, which is

creating embryos in order to conduct stem cell research. I find the

work of this clinic extremely disturbing. To me, this type of research is indicative of the problems we will continue to encounter

if we do not allow Federal funding with strict research guidelines

for embryonic stem cell research. As this case illustrates, without

stringent NIH ethical requirements, we are opening the door to an

array of different research standards which I believe could create

some serious consequences.

Mr. Chairman, today we stand on the threshold of a great opportunity. Embryonic stem cell research may be the single most important scientific discovery in our lifetimes. The most renown scientists in the country have told us that this research holds forth

the promise of treatments and perhaps cures for some of the most

debilitating diseases affecting our Nation and the whole world. I

think it would be a mistake to cutoff Federal support for this research.

Just a few hours ago, the NIH issued its report on stem cells. It’s

a very, very interesting report. Let me just read a couple of paragraphs and then I will finish. I think these are very important

paragraphs, and so I have singled them out, but I think the whole

report is deserving of great study.

‘‘Stem cells in adult tissues do not appear to have the same capacity to differentiate as do embryonic stem cells or embryonic

germ cells. Embryonic stem and germ cells are clearly pluripotent;

they can differentiate into any tissues derived from all three germ

layers of the embryo (ectoderm, mesoderm, and endoderm).’’

And then this: ‘‘Human embryonic stem cells can be generated in

abundant quantities in the laboratory and can be grown’’—that is,

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allowed to proliferate—‘‘in their undifferentiated (or unspecialized)

state for many, many generations. From a practical perspective in

basic research or eventual clinical application, it is significant that

millions of cells can be generated from one embryonic stem cell in

the laboratory. In many cases, however, researchers have had difficulty finding laboratory conditions under which some adult stem

cells can proliferate without becoming specialized.’’ Well, those are just a couple of paragraphs in what I consider to

be a pretty important study commissioned by the Secretary of

HHS, a pro-life Secretary, Tommy Thompson.

I look forward to working with you, Mr. Chairman, and others

on this issue, and I appreciate your allowing me to participate in

this valuable hearing today. I just want to say it is a real privilege

to be over here in the House and to be with all of you. Thank you

so much.

[The prepared statement of Senator Hatch follows:]

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Mr. SOUDER. Thank you. I would now like to recognize our distinguished chairman, Mr. Burton, for an opening statement.

Mr. BURTON. Thank you, Mr. Chairman. I deliberately did not

prepare an opening statement because, while I am a very strong

supporter of the pro-life position, I think we are facing a moral dilemma here in this country, and I think we ought to listen to all

the facts and see if there isn’t some kind of middle ground that can

be achieved so that we can move on with scientific research that

will benefit mankind. But if it imperils the right to life of children

to be born, then, of course, we have to come down the moral side,

in my opinion, and that would be to protect the life of a fetus that

is about to become a human being.

But, at the same time, I think we need to hear all the facts and

see if there is a middle ground, and I hope that all the parties on

both sides of this issue, or all sides of this issue, take the time to

listen to one another to see if something can’t be worked out that

will benefit all of us.

Thank you, Mr. Chairman.

Mr. SOUDER. Thank you. I would now like to recognize Mr. Waxman, the ranking member of the full committee, for an opening

statement. It is a privilege to have you here.

Mr. WAXMAN. Thank you very much, Mr. Chairman, for calling

this hearing. I am pleased that Senator Hatch was with us to deliver his statement. I thought it was an excellent statement.

It will come as no surprise to learn that I support this promising

approach, this research, as a way to cure some of our most serious

illnesses, but I think the best contribution I can make today is to

try to focus about what this debate is about.

First of all, it is not a debate about abortion and a woman’s right

to choose to terminate a pregnancy. There are anti-abortion advocates on both sides of this issue, including my friend Orrin Hatch.

It is not a debate about science. No one doubts that embryonic

stem cell research holds potentially important breakthroughs in

understanding, and the scientific consensus, as documented in that

NIH report which the Senator referred to and which I would ask

be included in the record, is clear that embryonic stem cells hold

promise that other sources do not.

It is not a debate about the need. Advocates for people with Parkinson’s, diabetes, Alzheimer’s, and myriad other illnesses have

come forward to support this research. It is not a debate about

budgets. There is substantial funding available at the National Institutes of Health.

The stem cell debate is fundamentally about in vitro fertilization

and what follows from it. In vitro fertilization is widely practiced

and it is widely supported in the United States. Many of us have

friends who have used it. I am sure that many of the people in the

audience and on the dias know people who have used it. Simply

put, in vitro fertilization is the combination of an egg cell and a

sperm cell in a lab dish to create a fertilized egg or an embryo. The

embryo is then transferred to the mother’s womb, and if the IVF

is successful, it will become implanted and develop into a full pregnancy.

In vitro fertilization often produces more fertilized eggs than are

needed to allow a woman to become pregnant. In some cases, IVF

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parents may donate these additional fertilized eggs to other people

who want a child, and they are to be commended for doing so. If

there is informed consent and agreement by donors and adoptive

families, everything is appropriate.

But there are currently more fertilized eggs than used or needed,

and thus, comes the question: Should scientists be required to discard these additional fertilized eggs or should they be allowed to

study them? I think we should study them. To destroy them or

bury them or even keep them frozen forever is simply wrong. It is

as unreasonable as throwing out organs rather than transplanting

them to people who need new organs.

Embryonic stem cell research is needed to help with disease and

disabilities. I believe it is not only ethically permissible to do stem

cell research; it is unethical not to do it.

In closing, I want to acknowledge that some people do differ in

this area. Some believe that a fertilized egg, whether it is inside

a womb or inside a test tube, is the same as a human being. They

also oppose in vitro fertilization as it is generally practiced as well

as some or all methods of family planning. I do not question their

sincerity, but I simply do not agree. I do not believe that the government should abandon potentially life-saving research in order to

give a cell, a special cell but only a cell, the same rights and protections as a person. If scientific and ethical standards can be met, the

research must be allowed to go forward.

So long as in vitro fertilization is practiced, it will always present

the question of discard or study. If we are to behave ethically toward the sick, we must answer by studying.

I look forward to hearing from our witnesses, and I hope that

Congress will join together, wherever people are on the abortion debate, as we once did on the question of fetal tissue transplantation,

to allow that transplantation research to go forward. We should

allow this research to go forward as well. To stop it in its tracks

seems to me to only discard these embryos and tell people who are

anxious for life that their troubles are not important and their life

is not as valuable. Thank you very much, Mr. Chairman.

[The prepared statement of Hon. Henry A. Waxman follows:]

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Mr. SOUDER. Thank you. Mr. Mica, do you have an opening statement?

Mr. MICA. Thank you, Mr. Chairman, and thank you for convening this hearing. I think it really will center around one of the most

important ethical and moral debates that we have conducted not

only in this committee, but also in Congress.

I think everyone jointly would like to assist those that suffer

from Alzheimer’s disease, who have had spinal damage, cancer, and

other infirmities or fatal diseases that we could gain assistance to

cure them or assist them in their suffering. The question, however,

before us today is a question of the use of Federal funds, and the

question I don’t think is whether or not embryonic stem cells are

taken from a refrigerator or a petri dish, but I think it goes beyond

that. For one of the first times I can ever remember, it is the question of government really becoming involved in the question of creation of life, and then taking that life that is created and using

part of it in experimental research. If this was proposed in the forties, people would be shocked. If this was proposed in the sixties

and seventies, people would be astounded. But we do live in a different era. But, again, it raises incredibly significant moral and

ethical questions that I think we are going to have to answer, particularly the use of Federal funds.

As emotional as this debate is between Members of Congress, I

think it is just as emotional with the public at large. Many of those

taxpayers are contributing to the Federal funds which may be used

in a manner which they find objectionable. I can only say that this

debate gives new meaning to the question that has been asked for

centuries. Maybe Shakespeare framed it best when he said, ‘‘To be

or not to be, that is the question.’’ Hopefully, we will be able to sort

out the answer.

Thank you, Mr. Chairman.

Mr. SOUDER. Mr. Allen, do you have an opening statement?

Mr. ALLEN. I do. Thank you, Mr. Chairman, for the opportunity

to speak on embryonic stem cell research. I appreciate all of the

work that you and Ranking Member Cummings have done to bring

this important issue before the subcommittee.

I support stem cell research. Through their work with fetal tissue, researchers have been able to harness embryonic stem cells

which have the ability to become any type of human cell. These discoveries are vital—indeed, the most promising part—of our effort

to find cures and treatments for diseases such as Parkinson’s, juvenile diabetes, Alzheimer’s, and AIDS.

I recognize the ethical issues raised by this research, but I believe that Stanford University biologist/Nobelist Paul Berg, who

signed a letter to President Bush in January supporting stem cell

research, put it well. He said, ‘‘The cells exist and they’re being destroyed, and you have to decide whether you are going to just let

that happen without getting any of the potential benefits.’’

Limiting crucial research to adult stem cells, a position suggested

by the President, is, I believe, shortsighted. Most scientists at the

National Academy of Science Workshop on Stem Cells agreed that

the evidence for the broad potential of adult stem cells is scant.

This administration should implement the guidelines that were

published by the National Institutes of Health last August. The

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guidelines would allow funding for research only on frozen embryos

which would not be used for other purposes by fertility clinics.

Continuing Federal support is critical because the resources devoted to this life-saving research needs to be increased. Banning

Federal funding for stem cell research, as the Bush administration

and some Members of Congress are considering, would not eliminate such research. The private sector will continue without the

benefit of ethical regulation explicit in the stringent NIH guidelines. This Congress and this administration should promote funding for the medical community for pursuing this promising avenue

of research that may improve the lives of millions of Americans.

HHS Secretary Tommy Thompson, in addition to many pro-life

Members of the House and Senate like Senator Hatch, he has indicated his support, and they have theirs. They agree that stem cell

research is not about being pro-choice or anti-choice. This is about

medical discovery. Political considerations should not obstruct biomedical discoveries of this magnitude.

Again, I want to thank you, Mr. Chairman, for holding this hearing.

Mr. SOUDER. Thank you. The order that I am going in for opening statements are first in order of seniority on the subcommittee,

then members of the full committee, then those who aren’t on the

committee who are guests today. Mr. Gilman, you’re now recognized for an opening statement.

Mr. GILMAN. Thank you, Mr. Chairman. I want to thank you for

conducting this hearing and for your leadership throughout our

committee work.

I would also like to welcome today’s witnesses, and I think we

have some good panelists. We look forward to hearing from each

and every one of them as we seek to learn more about stem cells

and their place in medical research.

Stem cell research has recently become a highly debated issue

that has divided our Nation. Recent studies have shown that the

use of embryonic stem cells may hold the key to developing cures

for a variety of diseases, including Parkinson’s, Alzheimer’s, juvenile diabetes, and spinal cord injuries, to mention a few.

I look forward to hearing from our medical experts who have

come before our committee about the possible benefits of using embryonic cells against stem cells from other sources. The potential

human health and scientific benefits of using embryonic stem cells

should lead to an immediate reversal of the ban that prevents the

NIH from pursuing invaluable embryonic stem cell research. Hopefully, the administration will make the right decision and, in turn,

will help millions of Americans afflicted with so many of these serious illnesses.

Mr. Chairman, this is an important hearing, and I thank you

and I thank our panelists for taking the time to be with us today.

Thank you, Mr. Chairman.

Mr. SOUDER. Thank you. Congresswoman Schakowsky.

Ms. SCHAKOWSKY. Thank you, Mr. Chairman. I ask unanimous

consent to put my full statement in the record. I have some comments to make. Thank you.

I appreciate your calling this hearing today, Mr. Chairman. Stem

cell research is a medical issue, one that I hope shall transcend poVerDate 11-MAY-2000 11:24 Mar 26, 2002 Jkt 000000 PO 00000 Frm 00032 Fmt 6633 Sfmt 6633 C:\DOCS\77248.TXT HGOVREF1 PsN: HGOVREF1
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litical lines and instead focus on human lives. One such life is my

mother-in-law at Lake Cremer who suffers from Parkinson’s disease, as does our colleague and my dear friend, Lane Evans. Another life is my friend Bonnie Wilson, who is listening right now

in the anteroom, whose daughter Jennifer has suffered for 25 years

from juvenile diabetes, and another is Nadi Nalshami, my Deputy

Staff Director, who is a long-time diabetes sufferer and worries

about his daughter because diabetes runs in the family, who may

needlessly suffer from diabetes.

And another is Carolyn Laughlin, the mother of two diabetic sons

from my home town of Evanston, IL, who wrote to me this past

April to share her family’s struggles and urged my support, which

I give, for federally funded stem cell research. She wrote, ‘‘Diabetes

haunts my family every waking hour. Injections, blood testing, calculating food portions, are constant companions of my sons. Overnight I fear insulin reactions that will leave them unconscious.

Long term, we face concerns of kidney failure, blindness, and amputations.’’ Adult stem cells, suggested as an alternative, have been instrumental in saving lives, and we can see, as we will be able to see,

I think, from some of our panelists. However, there are recognized

limitations on the usefulness of adult stem cells when compared to

embryonic stem cells. While it is important to continue the research with adult stem cells, it is vital to include embryonic stem

cells in this field of research.

Additionally, I urge my colleagues to keep in mind the other implications of not funding this research. Without public funding, scientists will increasingly turn to private companies. Private companies restrict the free flow of information, keeping their discoveries

to themselves sometimes. Without the free flow of information, we

risk slowing down major advancements in this field of research. We

also risk losing our top scientists to other countries, as we have already seen happen. This has already been the result of the delayed

decision in providing funding. Yesterday morning the newspapers

reported the decision of Dr. Roger Peterson of the University of

California, San Francisco, his decision to move to Britain to work

on embryonic stem cell research.

Federal funding guidelines assure that the research will meet

ethical standards and allow advancements to be made as quickly

as possible. The Laughlins and millions of other families are counting on us.

I look forward to hearing from all of our witnesses today and engaging in a worthwhile discussion on this subject. Thank you, Mr.

Chairman.

[The prepared statement of Hon. Janice D. Schakowsky follows:]

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Mr. SOUDER. Congresswoman Davis.

Mrs. JO ANN DAVIS OF VIRGINIA. Thank you, Mr. Chairman, and

thank you, witnesses, for coming here today.

I would like to urge the administration to support ethical adult

stem cell research and to reject Federal funding of stem cell research that results in the destruction of human embryos. We have

been constantly told by supporters of embryonic research that the

research will be performed on embryos that were destined to be

otherwise discarded and that it is better that they be used for humane purposes and experimentation. Now we have learned that researchers are using human embryos created for the specific purpose of harvesting the stem cells for research, and donors are being

paid for their participation. They are now creating human life to

destroy it.

Human embryos are not commodities to be harvested and used

for the benefit of others. The administration should not put its

blessings on such research provided by Federal funding. Adult stem

cell research is a promising and ethical alternative, and we should

be focusing Federal dollars on pursuing the medical breakthroughs

that it has produced.

Thank you, Mr. Chairman.

Mr. SOUDER. Dr. David Weldon.

Mr. WELDON. Thank you, Mr. Chairman. I just want to state that

I practiced medicine for 15 years before I was elected to the U.S.

Congress. I still see patients about once a month back in my congressional district. I have taken care of hundreds, perhaps thousands, of people with diabetes mellitus, an extremely common disease. I have seen the ravages of that disease, how it can cause

blindness, neuropathies, vascular disease. I have taken care of

many patients with Parkinson’s disease, Alzheimer’s disease, paralysis, a whole host of devastating diseases.

The issue that we are holding this hearing about is the ethical

path that we are going to take in a whole new area called regenerative medicine, where these diseases will ultimately be overcome

or conquered through the use of developing the tissues needed to

replace the damaged or the injured tissues in the body. In the case

of diabetes mellitus, particularly Type I diabetes, it is the islet

cells, the beta islet cells that produce insulin that need to be replaced.

Now there are people who are trying to claim that embryonic

cells are the most promising and that the adult stem cells are problematic, and I would challenge anybody who makes such an assertion to debate me on the merits of that issue, because I have reviewed the medical literature on this, and that is a preposterous

assumption. Adult stem cells are currently today being used to

treat leukemias. There are currently today research studies showing that adult stem cells have been used to treat lupus, to treat

cartilage defects in kids.

The advocates for embryo stem cell research do not even have an

animal model of the successful treatment of a disease. They do not

even have an animal model for that. There are serious problems

with this whole scenario in that the belief is you are sick; you get

sick, you go to the doctor, and they will somehow either take an

embryo and develop the cells to replace your need or take stem

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cells from your body to develop the cells to replace your need. Well,

embryonic stem cells, the advocates for embryonic stem cell research have not explained to me or any place in the scientific literature how they’re going to overcome the issue of tissue rejection,

whereas when you use adult stem cells, that’s not operative. Indeed, all of the promising research appears to be in the arena of

adult stem cells. Embryonic stem cell research, to me, is highly hypothetical.

I would like to add that what we are not debating today—and

my colleague from Florida, Mr. Mica, pointed this out—whether

this research is allowed in the United States. Embryonic stem cell

research is currently legal in America. The issue is whether or not

the Federal Government is going to fund this research. I would

hold that, if this research was as promising as the advocates for

this research claim, that the biotech community would be galloping

into this arena to fund this area of research. Most of the promising

research appears to be in adult stem cells.

There is a serious ethical problem, and the serious ethical problem is this: Are we going to hold as a culture or society a sanctity

of human life ethic or a utilitarian approach to the value of human

life? That is really what it boils down to. The utilitarian approach

to human life says, well, we can use these things because somebody

else might be helped. The opposite position is that human life is

sacred and it needs to be defended and protected.

It has been claimed, and I have heard it said today, that it will

be required to destroy these embryos. Nowhere are we debating

that in this capital. We are debating whether or not it will be funded by the U.S. Government. I believe if you want to put your

money in the most promising arena, it is in the arena of adult stem

cell research, and that is based on my review of the medical literature. Again, I would challenge anybody to present to me the

data that embryonic stem cells are the most promising, because

they are not.

Mr. SOUDER. Thank you. We have been joined today by the distinguished gentlelady from New York, from our full committee,

Congresswoman Maloney.

Mrs. MALONEY. Thank you very much, Chairman Souder. I thank

you for holding this important hearing with Ranking Member

Cummings.

I would like to ask unanimous consent to put my full statement

in the record, but in the interest of time I would just merely like

to state that I look forward to hearing from our panelists. One is

a constituent of mine, Dr. Gerald Fischbach, a distinguished scientist from Columbia University, and one of my colleagues with

whom I have worked many years, Joan Samuelson, from the Parkinson’s Action Network. I am proud to be the founder and co-chair

of the Parkinson’s Task Force here in Congress in a bipartisan

way.

Very briefly, earlier today, along with my colleague, Connie

Morella, we stood with roughly 20 Members of Congress in the

House and over 5 Senators in support of House Resolution 17,

which I co-authored with Mrs. Morella, which calls upon government to support science, to support the guidelines from the National Institutes of Health, which have been vetted. It is a strong,

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solid policy which is scientifically, legally, and ethically balanced

and thoughtful.

Two of the Senators that joined us are against abortion; they are

pro-life, and they made a very, very important statement that this

debate has nothing to do with abortion; it has everything to do

with life, saving people’s lives, and they came out very, very strongly in support of the NIH guidelines.

We have been circulating a letter, and we have many people who

have signed it in both the House and the Senate. One of my colleagues in the Senate told me that over 70 Senators have indicated

to him their support for stem cell research.

There were seven individuals who joined us who are suffering

from diseases, and there is no cure for these diseases. We call them

the ‘‘seven faces of hope,’’ hope that stem cell research can go forward and that there can be possibly a cure.

Many of us have been touched in a very personal way by the

need for the President to approve the NIH guidelines. My father

suffers from Parkinson’s, and I have been able to see firsthand the

terrible effect of this disease on him. I have met with many scientists who tell me there is no cure; at this point there is no cure.

But some have told me that, if we give them the tools, they believe they can solve this mystery; they can come up with a cure.

Some have stated that they can do so within 5 years, if we give

them the tools to go forward with stem cell research.

So my testimony that I am putting in the record basically says

that we should support the scientists; we should support the professionals in our society who have researched this and who feel

that they can come forward with cures. Let them do their job.

I would also like to place in the record a clipping from one of our

national newspapers that talks about a scientist who is leaving

America to go and work in another country that has Federal support for research. Granted, we could have private research, but

isn’t it better to have it out in the open with hearings, oversight,

and with the very important support of Federal dollars?

So I thank the chairman. I look forward to all of the testimony

and, again, request that I could place in the record the letter to the

President, the resolution, the press clipping, and my statement in

support of science. Thank you.

[The prepared statement of Hon. Carolyn B. Maloney follows:]

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Mr. SOUDER. Thank you. We have also been joined by Congressman Lewis from the full committee.

Mr. LEWIS OF KENTUCKY. Thank you, Mr. Chairman. Thank you

for giving me the opportunity to participate in the hearing today.

Like many here, I have a strong interest in this issue. My sister,

who suffered from diabetes during her life, passed away from lung

cancer, and several members of my extended family have suffered

from Alzheimer’s disease.

I want to make it very clear that all of us emphatically support

stem cell research. It holds great potential for curing diseases that

plague society today. No one here is opposed to stem cell research.

The question before the administration is whether to engage in ethical stem cell research or not.

Former President Clinton’s National Bioethics Advisory Commission wrote in its September 1999 report, ‘‘In our judgment, the derivation of stem cells from embryos remaining following infertility

treatments is justifiable only if no less morally problematic alternatives are available for advancing the research.’’

Mr. Chairman, I am pleased to present an ethical alternative

that is less morally problematic and it is producing fantastic results. Large Scale Biology Corp., a biotechnology company based in

Owensboro, KY, partnered up with an NIH research team to discover the protein responsible for making embryonic stem cells reproduce so rapidly, and they identified it. When this protein is applied to adult stem cells, they behave like embryonic stem cells.

They reproduce rapidly and with the same genetic transferability.

The slowness of adult stem cell reproduction has been at the core

of this debate. That argument has now been refuted by this research. LSBC and the NIH research team have already used their

new-found growth factor to produce personalized cancer vaccines

specifically curing non-Hodgkins lymphoma and sickle cell anemia.

Legal doses of radiation have already been cured in lab tests, giving new hope to cancer patients who suffer with the effects of radiation treatment.

I am presenting a proven alternative today that avoids all the

ethical problems created by the use of embryonic stem cells in research. I urge the committee and the President to support this holistically life-preserving research as a morally justifiable alternative that all of us can agree on.

I thank the chairman for holding this hearing today, and I hope

this committee can hold future hearings on this alternative and

other positive ways to engage in stem cell research. Thank you.

Mr. SOUDER. Thank you. We have also been joined by Congressman Chris Smith of New Jersey. Do you have an opening statement?

Mr. SMITH OF NEW JERSEY. Thank you very much, Mr. Chairman. Mr. Chairman, yesterday I met three wonderful children,

Hannah, Mark, and Luke, along with their courageous and loving

parents. Hannah, Mark, and Luke are here today to witness to the

Congress, the President, and to the world, that every human being,

no matter how small, has innate value, dignity, and purpose. They

are here today as survivors, having overcome the perils of cryogenic

freezing at a very young age. All three have emerged from their

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frozen orphanages to be loved and cared for by their adoptive parents. They are pioneers, the start of a new chapter in adoption.

And they are, indeed, the lucky ones, because if the President

and the Congress decide to federally fund human embryonic stem

cell research, which is always fatal to the newly created human

being—Mr. Waxman earlier mentioned that we just want to study

them. To study them, you have to kill them. If we follow that and

we federally fund that, a generation of Hannahs, Marks, and Lukes

will be lost forever.

These littlest of human beings aren’t potential life, but life with

vast potential. So I find it highly offensive, insensitive, and inhumane to label human embryos as excess or throwaways or spare or

expendable. Hannah, Mark, and Luke weren’t spare; they weren’t

expendable; they weren’t junk. These little kids, like little kids everywhere, are not excess. The miracle of human life deserves more

respect than that. Hannah, Mark, and Luke are living proof that

tens of thousands of human beings existing today in frozen orphanages can and should be placed with caring adoptive parents, not

abandoned as fodder to a person in a white coat demanding more

material.

Thankfully, there is a viable, scientifically sound, exciting alternative to destructive human embryo cell research. Adult stem cells

and other post-natal stem cells, as Dr. Weldon pointed out so well,

have enormous potential to cure a myriad of diseases and conditions without turning human beings into guinea pigs.

In the past few months several dramatic breakthroughs have

been reported by the New England Journal of Medicine. The press

is getting it right, and they are reporting it, validating the promise

of adult stem cell research and highlighting the new dangers from

the use of embryonic stem cells.

Dr. Donald Orlich of the National Human Genome Research Institute recently said, ‘‘We are currently finding that these adult

stem cells can function as well, perhaps even better, than embryonic stem cells.’’

The supply of life-saving stem cells procured from ethical sources

is limitless, and adult stem cells don’t carry the severe risk of immune rejection and tumor formation, two problems associated with

embryonic stem cells. Moreover, contrary to hype and hyperbole,

adult stem cells have been used in many clinical trials with great

success, while human embryonic stem cells have never been used

successfully in clinical trials.

As a matter of fact, a New York Times story on March 8th of this

year entitled, ‘‘Parkinson’s Stem Cell Implant Yields Side Effects,’’

noted that stem cells from fetal tissue gave patients terrible side

effects. In the words of Dr. Paul Green, ‘‘The uncontrollable movements some patients suffered were absolutely devastating. It was

tragic, catastrophic. It’s a real nightmare and we can’t selectively

turn it off.’’

And unlike embryonic stem cells, which, again, have never been

used in any clinical applications, adult stem cells are today helping

to treat numerous conditions, including brain tumors, ovarian cancer, leukemia, breast cancer, non-Hodgkin’s lymphoma, autoimmune diseases, stroke, anemia, blood, and liver diseases.

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Mr. Chairman, as you may know, I have introduced legislation

to expand Federal funding for adult stem cell research, to establish

a stem cell bank using these ethically procured tissues, because it

holds the promise of saving lives without destroying lives.

Furthermore, recent studies have shown that adult stem cells

have the exciting potential to treat diabetes, and I, too, have diabetes in my family, Type I, two of my family members. It also can

treat spinal cord injuries. Mr. Chairman, as you know, I’m chairman of the House Veterans’ Affairs Committee. This year we pro- vided over $700 million for health care and more money for research dollars because so many of our veterans are afflicted by

many anomalies, including spinal cord injuries. I want to see cures.

I want to see restoration. All of us do. The question is: How do we

proceed? Will we do it ethically or unethically?

Let me also say, finally, Mr. Chairman—and I would ask that my

full statement be made a part of the record—I am co-chairman of

the Alzheimer’s Caucus, and we have been pushing for more money for NIH. This year we hope to see it go up by about $200 million

more and the following year by $250 million more than that, to get

to about $1 billion for Alzheimer’s. There’s 4 million people today

with Alzheimer’s. That will jump to 14 million. We can find a cure,

but we must do it ethically. We must marry up the research dollars

with ethical and humane ways of doing research, not by killing

human embryos.

Thank you, Mr. Chairman.

[The prepared statement of Hon. Chris Smith follows:]

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Mr. SOUDER. I thank the gentleman.

Before proceeding further, I would like to take care of a couple

of procedural matters. First, I would ask unanimous consent that

all Members have 5 legislative days to submit their full written

statements and questions for the hearing record, and any answers

to written questions provided by the witnesses also be included in

the record, including those who have asked heretofore. Without objection, it is so ordered.

Second, I ask unanimous consent that all exhibits, documents,

and other materials referred to by the Members and the witnesses,

including in their opening statements, be included in the hearing

record, and that all Members be permitted to revise and extend

their remarks. Without objection, it is so ordered.

And on the third point, I want to clarify that this, after talking

with the chairman and the ranking member in general on this subject, this should not be a precedent for the other subcommittees or

the full committee. We have been doing it in this subcommittee on

the issue of charitable choice; we have done it on the issue of

methamphetamines just last week—including Members who aren’t

part of the subcommittee and the full committee, but we are going

to review that policy after this hearing because of potential precedence on the full committee.

So, third, I would like to ask unanimous consent that the

gentlelady from Maryland—these are the people who have requested it for this committee—the gentlelady from Maryland, Mrs.

Morella; the gentlelady from New York, Mrs. Maloney; the gentleman from Kentucky, Mr. Lewis; the gentleman from New Jersey,

Mr. Smith, and the Senator from Utah, Senator Hatch, who are not

members of the subcommittee, be permitted to participate in the

hearing after all members of the subcommittee have completed

their questioning in each round. Without objection, it is so ordered.

Now if the witnesses on the first panel would come forward to

the dais: Marlene Strege and her daughter Hannah, the first-ever

adopted embryo family; Lucinda Borden and the adopted embryo

twins, Mark and Luke Borden, and JoAnn L. Davidson of the

Christian Adoption and Family Services.

And if you will remain standing as you come forward, as an oversight committee it is our standard practice to have all witnesses

testify under oath. So if you will raise your right hands, I will administer the oath.

[Witnesses sworn.]

Mr. SOUDER. Let the record show that all the witnesses have answered in the affirmative.

You can go ahead and sit down.

As you may know, we typically ask our witnesses to summarize

their testimony in 5 minutes and will include your statement and

any further additional comments in the record.

Mrs. Strege, if you would begin?

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STATEMENTS OF MARLENE STREGE; LUCINDA BORDEN; JOHN

BORDEN; AND JO ANN L. DAVIDSON, CHRISTIAN ADOPTION

AND FAMILY SERVICES

Ms. STREGE. I am Marlene Strege, a resident of Fallbrook, CA.

Today I am accompanied by my husband John and our daughter

Hannah. Thank you for this opportunity to testify.

Our story begins in 1996, when John and I realized we had a fertility problem. We tried expensive infertility treatments for nearly

a year, which proved ineffective. Estimates of the number of Americans affected by infertility range from 6.5 to 10 million couples.

Traditional and international adoption could not satisfy my deepest

longing to experience pregnancy and childbirth. Despite its high

cost, we decided to pursue in vitro fertilization, but on January 14,

1997 we were told I had premature ovarian failure and was not

producing eggs any longer. Physicians told us our only option was

to obtain donor eggs.

I asked whether we could adopt embryos. The physician appeared agreeable at first, but then would not help us. Other physicians suggested donor embryos, but John and I were uncomfortable

with this. It felt more akin to purchasing a car based on options

than adopting a child.

During this time we also contacted what is now Nightlight Christian Adoptions to inquire whether they offered embryo adoption.

Although they did not, the Executive Director thought they should

offer this service. The Snowflake Embryo Adoption Program was

born.

Hannah’s genetic parents chose us for the embryo adoption the

same way a birth mother chooses a family. We completed all the

requirements for the State of California for adoption, including a

home study. Following our matching and relinquishment of their

embryos, we agreed with Hannah’s genetic parents to an open

adoption agreement in March 1998, including a confidentiality provision.

After successfully securing a physician, Hannah and her 19 siblings were flown overnight to our IVF clinic in Pasadena, CA. My

body was prepared to receive three embryos with a series of hormonal injections. During my first transfer, no children successfully

implanted. Accordingly, physicians thawed the remaining eight embryos on April 19, 1998. Three survived, including Hannah. The

embryologist snapped a picture of Hannah and her siblings for our

baby book. No mere dot, she contained the entire blueprint for

human life.

Hannah continued to develop overnight outside my body. The

physician referred to this as compaction, a process where the cells

start to move to one side and a fluid-filled sac began forming. We

have a picture of Hannah when this occurred outside my body on

April 11, 1998, the day she and her siblings were transferred into

my uterus.

On April 20, 1998, I learned I was pregnant, and an ultrasound

on May 4, 1998 confirmed I was pregnant with one baby. Hannah,

now safely in my womb, was only receiving from me oxygen, nutrients, a warm place to grow, and love throughout my entire pregnancy. Subsequent ultrasounds showed Hannah was doing just

fine.

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Hannah Eileen Strege was born on December 31, 1998. She is

the best gift parents could have and no different than all children,

all of whom were once embryos either in the petri dish or the fallopian tubes.

John and I adopted Hannah long before we knew about public

controversy involving embryo stem cell research. Mary Tyler Moore

and Senator Tom Harkin sparked our desire to speak out on this

issue. We’ve had to watch Ms. Moore compare our daughter to a

goldfish, and Senator Harkin likened her to a dot on a piece of

paper and referred to her as expendable. Obviously, she is none of

these.

Notwithstanding the message conveyed by the media, John and

I care deeply about identifying therapies and cures for serious diseases. As an occupational therapist, I care for many people who

have severe disabilities. My mother died from pancreatic cancer.

We paid to save our daughter’s cord blood at birth to advance umbilical stem cell research designed to overcome serious disease.

Another myth propagated by the media is that embryos exist ‘‘in

excess of need.’’ More infertile couples exist than embryos likely to

survive thawing. My OB/GYN told me any woman can carry any

embryo. Tissue and blood matching is not necessary. As embryo

adoption proliferates in the wake of this controversy, the excess

supply of embryos will evaporate.

Hannah is an ambassador for the roughly 188,000 frozen human

embryos like her in frozen orphanages who could be adopted rather

than terminated with assistance from my Federal tax dollars. We

plead with Congress not to force millions of Americans like me to

violate our consciences and participate in another form of genocide,

especially when the advances possible with the other stem cells are

not nearly exhausted.

In closing, I am very proud to be part of this new generation of

adopting mothers.

[The prepared statement of Ms. Strege follows:]

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Mr. SOUDER. Thank you very much. Mrs. Borden.

Ms. BORDEN. I am Lucinda Borden, and I am accompanied today

by my husband John and my twin sons, Luke and Mark Borden.

I was told in 1997, after 5 years of trying unsuccessfully to conceive, that I could not ovulate. This was devastating for me and difficult for John, albeit John, as a widower, experienced the miracle

of childbirth three times. Over the course of a year, I went through

a severe grieving process involving denial, anger, and finally acceptance.

In the last stage of my grieving, John and I began considering

traditional adoption as an alternative to conception. I had a few serious reservations. First, I could not experience pregnancy through

child adoption. My deepest desire was to carry a baby and bond

with it. I also hoped to control its nutritional and other input during the gestational period. Obviously, this would not be possible

with traditional adoption.

Second, I was adopted through a closed adoption in 1965 and

wrestled until 1997 with wanting to know about my biological parents. My adoptive parents strongly opposed this, fearing that I

would abandon them. I began to share the same fear when we considered adoption. However, when I met my own genetic parents in

1997, I realized that the bond I shared with my adoptive family

could never be severed. This assuaged my own fears about open

adoption, designed to acquaint my children with their birth parents

and allow them to ask the questions I wanted answered.

Accordingly, John and I decided to apply for an open adoption of

a child in July 1999. We began a home study through Nightlight

Christian Adoptions, the same agency through which I was adopted, and submitted a portfolio on our family. We also went through

medical, psychological, paternal, and background evaluations.

Then the agency announced a new service: embryo adoption. Because it featured conception, we immediately changed course in

favor of it. After reviewing our home study, Mark and Luke’s genetic parents, Tim and Donna Zane, approved us as adoptive parents. We also selected them.

The Zanes conceived 10 embryos approximately July 1998. They

froze six embryos for future use, in the event the initial transfer

failed. Mark and Luke’s genetic parents originally intended to terminate them if the embryos proved unnecessary to conceive. In

February 1999, after they gave birth to triplets, they realized they

could not destroy their six siblings. Surveying the Internet for a solution, the Zanes stumbled across the Snowflakes Program.

On December 10, 1999, the Zanes entered into contract with us

for an open adoption. The Zanes authorized us to implant two

straws containing three embryos each. We could not terminate any

of the embryos and agreed to advise the adoption agency and the

genetic family of the outcome of the implantation. Sadly, during

thawing, three of the Zanes’ embryos perished and could not be implanted.

I received 2 weeks of estrogen shots every 3 days to prepare my

womb for implantation; 3 days before and 12 weeks after implantation, physicians also gave me daily shots of progesterone. I also had

ultrasounds to ensure that my uterus was in good condition. The

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actual procedure took minutes. Then I had to lay idle for a few

hours in the office.

On January 31, three embryos were transferred into my womb.

The embryologist took a picture of Mark and Luke and their sibling

on this date. The following 2 weeks were the longest in our lives

as we waited to find out if they would attach. On February 14,

2000, Valentine’s Day, a blood test revealed I was pregnant. We

were ecstatic. At this point we did not know how many children

had attached. HCg levels over the next few weeks were high, but

perhaps not high enough for triplets. On February 28, 2000, we

had our first ultrasound and heard two heartbeats. We grieved for

our third child, who we named Matthew, but rejoiced in Mark and,

we were told, Hannah.

John and I began talking and singing to our kids right away. I

felt both children kick for the first time during the week of June

2000. On September 27, I delivered twins at 36.5 weeks by C-section. Mark and, as it turned out, Luke were born. In keeping with

our agreement with the Zanes, their birth certificates read ‘‘Mark

and Luke Borden.’’ The Zanes relinquished all parental rights over

them.

Watching the twins mature has been fun and educational. They

have interacted with each other since birth. Luke has a contagious

laugh. Mark is serious and takes everything into perspective before

giving a response. They have taught me so much about myself, as

a woman, a wife, and a mother. It is hard to put into words their

contribution to my life.

Like John and Marlene Strege, we have come forward today, despite our serious reservations about the effect of publicity on our

family and kids, to plead with you not to approve funding for research that will kill frozen embryos such as Mark and Luke were

roughly 11⁄2 years ago.

We understand and share the passion many calling for embryo

research have to find medical remedies for serious diseases. My

own adoptive mother died from complications related to lupus, and

my grandmother died from brain cancer. John’s first wife perished

from breast cancer. We have suffered terrible tragedy due to disease. However, we have also experienced unparalleled joy at the

birth of Mark and Luke. We are confident that my mother and

grandmother would never have sacrificed our children for their own

therapy.

Nor do we think any such sacrifice is necessary for medical

progress. It is clear that the advances possible with adult, placenta,

and umbilical stem cells are in their infancy. On the other hand,

recent articles suggest embryo stem cell research is deadly not just

for the donor embryo, but for the recipient patient.

Mark and Luke are living rebuttal to the claim that embryos are

not people. They are also testimony to the terrible loss this country

will perpetuate if you approve Federal funding for embryo stem cell

research. Thousands more children could be adopted by the millions of mothers desperately longing to conceive. Thousands more

could lend their talents and skills to this country. Accordingly, we

plead with you not to fund their slaughter.

And I ask that I be able to introduce my husband and my two

sons.

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Mr. SOUDER. Sure, go ahead.

Ms. BORDEN. This is John.

Mr. BORDEN. My name is John Borden, and I also testify to tell

the truth. [Laughter.]

I have a very, very brief statement and I talk very loud. So,

hopefully I won’t require a microphone.

I just would like Lucinda to hold up that picture, and what you

see is a picture of Mark and Luke and, unfortunately, the one child

that we lost. I would like to ask every member of this committee,

especially the members that aren’t here, and that question is:

Which one of my children would you kill? Which one would you

choose to take? Would you want to take Luke, the giggler, who we

call Turbo, or do you want to take the big guy, Tank? Which one

would you take?

We thank the chairman and this committee for allowing us to

make these statements. Thank you.

[The prepared statement of Ms. Borden follows:]

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Mr. SOUDER. Thank you very much, and we will have the record

show that Mr. Borden also took the oath.

We are having a vote, of all times, right now over in another

committee on drilling in the Arctic Wildlife Refuge, also a very

close vote. I am going to yield the chair to Mr. Weldon. Actually,

we will take the testimony of Ms. Davidson. We are clearly going

to have a vote on the House floor as well. Then we will come back

for questions.

I want to thank you both so much for coming forth today, and

we will talk about that further.

Mr. WELDON [assuming Chair]. Members are advised we will

take the testimony of Ms. Davidson and then recess for the vote.

Ms. Davidson, you may proceed with your testimony.

Ms. DAVIDSON. As the committee knows, my name is JoAnn Davidson. I am the program director of the Snowflakes Embryo Adoption Program for Nightlight Christian Adoptions.

I am here to let you know today that embryo adoption is not a

theory and it’s not an idea and it’s not a hope, but it is happening

right now in America. In fact, all 50 states permit living human

embryo adoption and implantation. In fact, embryo adoption is

proof positive that all embryos are not destroyed.

To date, the Snowflakes Program has seen eight babies born to

six families. Mark, Luke, and Hannah are three of those babies, as

you’ve met here today. 182 embryos in total from 28 genetic families have been adopted; 93 have survived the thaw, and we have

the babies that we’ve mentioned here today, you’ve seen today, and

other families. Twenty adopting families have gone through transfers. Nine of those families have babies. Five babies are currently

waiting to be born and are gestating in the wombs of three very

happy mothers.

Experience teaches us that at least 12,600 to 35,000 children

could be adopted, thawed, and successfully born from human embryos residing in what many call frozen orphanages. At least

188,000 embryos from approximately 23,000 families are currently

frozen, living in in vitro fertilization clinics throughout the United

States.

An increasing number of genetic parents, presented with the dilemma of what to do with their frozen embryos, like the alternative

of placing them with qualified families. Regardless of the medical

or legal status of their embryos, these genetic parents are emotionally invested in their offspring and feel responsible for their welfare.

After recent publicity on ABC’s Prime Time focusing on the dilemma that genetic parents face, the number of families enrolled

in our program increased 35 percent. In essence, there are no excess living human embryos available for research since all should

be entitled to an opportunity to live in a loving adoptive home. An

estimated 6.5 to 10 million couples suffer from infertility. Many of

these families could adopt and implant the existing population of

frozen embryos less expensively than the costs associated with

other in vitro fertilization processes.

Most of these infertile couples dearly want children and long to

conceive. For these families, embryo adoption provides the benefits

of pregnancy, pre-natal bonding, and child birth not found in tradiVerDate 11-MAY-2000 11:24 Mar 26, 2002 Jkt 000000 PO 00000 Frm 00079 Fmt 6633 Sfmt 6633 C:\DOCS\77248.TXT HGOVREF1 PsN: HGOVREF1
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tional adoption, and also includes the satisfaction of parenting a

waiting child. Embryo adoption is far less expensive than IVF

treatments, and since the families are adopting and not creating

embryos, they are helping to reduce, not contribute, to the supply

of embryos in storage.

Embryo adoption involves a thorough screening process designed

to ensure that embryos are placed with stable families meeting the

expectations of genetic parents. Adoptive families participate in a

standard home study, as required in all adoptions in the United

States. They divulge medical, psychological, paternal, and background information. The adoption agency preparing the home study

provides professional counseling, education to the adopting family

regarding integrating the child into their home, parenting, and

other issues unique to the family.

Properly freezing a living human embryo can preserve its life

until it is properly thawed, but about 50 percent of living human

embryos die in the process of freezing and thawing. While embryos

may die in the adoption process, they are not destroyed intentionally. Harvesting the stem cells from living human embryos always kills that embryo. Therefore, we can say that in embryonic

research the intent is necessarily to destroy the embryo. In adoption the intent is that every embryo be given the opportunity for

life.

Embryo adoption solves multiple problems: families for children,

children for families, and the number of embryos in storage tanks

across the Nation is reduced. Adoption, not destruction of, frozen

living human embryos is the best way to help infertile American

couples and does no harm to anyone.

Therefore, independent of the legal question whether an embryo

is or is not a legal person, we respectfully request, along with most

Americans, and especially infertile Americans, that Congress not

lift its existing ban against Federal funding for the destruction of

human embryos for any purpose. Alternative sources of stem cells

proven more effective are plentiful, and medical advances using

umbilical, placenta, and adult cells are just beginning.

There are some who would say that they are going to be destroyed anyway. I’m here to tell you that’s not necessary. We in

America are greater than that. We can and ought to save every embryo. We can do this through educating the public about embryo

adoption. We can do this by way of our IVF clinics including the

adoption option in their consent procedures; then to enforce and encourage limitations on the numbers of embryos that are created.

Human embryo adoption is not about ‘‘dots on a paper,’’ as Senator Harkin has referred to living human embryos. Rather, this debate is about whether we as an entire society want to federally

fund destructive human experimentation of the littlest humans.

Here in this room and in homes across America we must decide

whether we should compel every taxpayer to support destroying

human embryos at a stage of development through which each one

of us has passed. Are we going to accept the effect of genocide as

medical therapy? Having looked into the eyes of eight precious

newborns and frozen embryos, I, for one, will not.

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I implore Congress to provide more funding for alternative

sources of stem cells and extend to even the smallest of humans

in America the right to life, liberty, and the pursuit of happiness

through embryo adoption. Thank you very much.

[The prepared statement of Ms. Davidson follows:]

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Mr. WELDON. Thank you, Ms. Davidson.

The committee will stand in recess until the votes on the floor

are finished. We will then reconvene for questioning of this panel.

[Recess.]

Mr. SOUDER [resuming Chair]. The subcommittee is now back in

order.

I want to first say thank you to each of you for coming forth. It

is a very difficult subject, and I very much respect your right to privacy. I know that Mrs. Strege commented on the Mary Tyler Moore

statement about your children being like goldfish. I wondered, Mrs.

Borden, if you had any kind of similar reaction to that, or what motivated you, in particular, to come forth today?

Ms. BORDEN. Actually, I heard Mary Tyler Moore on a different

interview and didn’t hear that one. What motivated me to come forward was the fact that I had heard so many different people on TV

talking about, well, they’re either going to be destroyed or we can

do this wonderful thing and donate them to research where we’ll

destroy them, too. And I just kept thinking about all of the genetic

families sitting in their living rooms watching TV with their children that they had tried so hard to conceive and making decisions

about what to do with their leftover embryos, and nobody was telling them about the option of adoption. No one was telling them

that this was life. But they were looking at the product of their embryos. They were looking at their children, like I look at Mark and

Luke. That’s what prompted me to come forward.

Mr. SOUDER. I sure hope—and it is hard for us to know what will

happen in the final decisions of this administration, but I hope at

a minimum, a bare minimum out of today, that you have helped

draw attention to adoption as an option; that as we look at legislation, that we try to make sure that any clinic in America that offers this service to young mothers makes adoption-aware as part

of the process. Because I know friends who are similar in your situation, including my sister who adopted children, who are looking

all the time for the type of options that you two describe in your

testimony.

Your willingness to come forward and to lose your privacy will,

hopefully, at a minimum give many thousands of other families the

opportunity that you have, by endorsing that awareness today. I

praise you for your courage in coming out and losing your privacy,

which, quite frankly, you may or may not ever get back. That is

one of the difficult things, because you are interjected in a very

huge, contentious national debate.

How do you feel, because many people, even pro-life people, approach me and say, ‘‘Well, these frozen embryos just aren’t children.’’ Yet, in your testimony, Mrs. Strege, you talk about—we

heard one distinguished Member here today say that life can’t be

conceived in a petri dish, and that wasn’t really life. Could you

elaborate on that a little bit and where you think your children

began and how, and watched them evolve?

Ms. STREGE. Right. I have pictures of my daughter over there.

That was the day that she was thawed. The next picture is the

next day, the day they transferred her into me. A physician told

me that she had gone onto her next stage of human development—

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that was outside of my body—called compaction, when those cells

start to move to one side and a fluid-filled sac starts to form.

Furthermore, I’m the adoptive mom. The only thing I added to

my daughter was oxygen, nutrients, a warm place to grow, and

love. That’s a scientific fact. So, I mean, you’re going to have to tell

me what I added to her to be a human life. She went into me as

a human life, as an embryo. She came out of me as a human life,

as an infant. She is now in her human developmental stage of

toddlerhood. You know, I mean, you tell me what I added to her

to make her a human life.

Mr. SOUDER. Ms. Davidson, could you talk a little bit about— have you made contacts with other groups around the country? I’m

sorry I missed your testimony. I have the written testimony. What

do you think are the best ways for us to advance here in Congress

and through the administration adoption as an option? Because, as

was stated earlier, there may not be excess embryonic children if

adoption was, indeed, known as an option.

Ms. DAVIDSON. First of all, it would be that we let people know

that this is an option. We can do that through the IVF clinics. I

would like to see the IVF clinics being instructed to give informed

consent to their clients, meaning that all their options are educated—that they are educated about all their options, that information is passed on in the process of the informed consent procedure

that they do at this point in time.

Historically, we’ve seen clinics are offering destruction of the embryos, donation for research, continuing storage of the embryos, or

using them for their own additional children later on. Those are

four options. It is very simple to add line five and discuss embryo

adoption and make them aware of them.

We can also expand adoption agencies. We have other agencies

interested in expanding the program. The government funds adoption of children through States. We also have private entities doing

adoptions, like ourselves. We can have state-funded adoption agencies that include embryo adoption. They are just another child

waiting to be adopted.

Mr. SOUDER. This has obviously been a very contentious subject,

deeply dividing Members who share the concern about research to

help address these terrible diseases, but are divided on the question of human life and where the origins of life are. It would be

best if we could go ahead with the research on everything non-embryonic, where we don’t get into that division.

But, particularly to Mrs. Borden and Mrs. Strege, if the Members, some of whom may have been here today such as Senator

Hatch and Congressman Gilman and Congressman Waxman, who

didn’t get a chance to hear your testimony, and other Members of

Congress who haven’t heard your testimony, would you be willing

to meet with them so that they could meet your children and directly confront the consequences of a decision that would go forward with this kind of research?

Ms. BORDEN. Just tell us when and where.

Ms. STREGE. Yes.

Mr. SOUDER. Once again, I thank you for coming forth. I now

yield to Mr. Cummings.

Mr. CUMMINGS. Thank you very much, Mr. Chairman.

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As I am sitting here, first of all, I want to thank you all for coming. Thank you. As a parent, I can understand your joy, and children are truly gifts. There is no doubt about it.

On the other hand, I see children in my district. I so happen to

represent Johns Hopkins, and I see so many children who are suffering. They are not the happy children that I see here today. They

are children who have life-threatening illnesses, and parents struggle. It is a daily struggle to try to find cures to diseases that seem

to have no cures.

So you can imagine the dilemma that we find ourselves in. On

the one hand, we have the happy child and we have the happy parents. I have never been so struck by what happened just a few moments ago when you stood up and held your two beautiful children,

and then just the idea that they could have not been here. So that

has an effect on, I think, all of us.

But, at the same time, I think we all understand that in this life

we have one life to live; this is no dress rehearsal, and this is life.

So one of the things that I think we try to do is try to make life

as best we can help to make it for every child, so that they all will

have opportunity and we can nurture their nature.

Ms. Davidson, I just was wondering how this agency works. I

mean, how is it financed? I am just curious.

Ms. DAVIDSON. This program at this point in time is not a moneymaking program. It’s actually supported by our other adoptions

and by private contributions. We are a domestic and international

adoption agency as well. The program fees are paid by the adopting

family. They are nominal fees that will, hopefully, just cover base

expenses. We match just like in a traditional adoption. So our programs are run exactly like our other programs, but they are not

moneymaking programs at all.

Mr. CUMMINGS. So can you give me an idea of—I mean, are these

organizations that help fund it?

Ms. DAVIDSON. No, it’s privately funded by the fees the adoption

families pay, which is $3,500, is our fee, and then also by donations

through other families, and then also supported at this point in

time by the program, the other programs that we have, the fees

that are paid for those other programs.

Mr. CUMMINGS. OK, now you may have said this a little bit earlier, but how do you all connect with getting the embryos? I mean,

how does that work, you all getting the opportunity to even do

what you do?

Ms. DAVIDSON. The genetic families call us and contact their fertility clinics and let them know that they are moving their embryos

to an adopting family. We don’t pursue relationships with any clinics. We don’t have a contract with any clinics that they would refer

families to us. We’ve had families who find us, like somebody said,

through the Internet. Other families have heard about us through

their clinic. Other families have heard about us through media or

other sources, and have gone to their clinics and said, ‘‘We want

to work with this program.’’

Mr. CUMMINGS. Is there any time limitation with regard to how

old, I mean how long, the embryos have been frozen? Is there any

limitation that you all have?

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Ms. DAVIDSON. None at all. We believe all children should be

given a chance to be born, and it doesn’t matter if they were conceived 3 years ago or 10 years ago.

Mr. CUMMINGS. I am pretty sure our next panel will be able to

answer some of these questions more from a scientific standpoint.

So it is quite possible an embryo may have been conceived 7 or 8

years ago. Do you all have that kind of information available? In

other words, when you all decide to work out the adoption process,

is that information available as to how long—I see you all nodding

your heads.

Ms. BORDEN. Yes.

Ms. STREGE. Yes.

Ms. DAVIDSON. They certainly know how old their siblings are.

Mr. CUMMINGS. You wanted to say something?

Ms. BORDEN. We were aware—we know Mark and Luke have

siblings, genetic siblings, that are 18 months older than them. So

we’re aware of that.

Ms. STREGE. We have a confidentiality provision in our agreement, so I am unable to speak of anything prior to our adoption

of our daughter.

Mr. CUMMINGS. OK. I understand.

Ms. Davidson, I guess one of the things that sort of is underlying

all of our discussion is this idea that at some point it is assumed

that these embryos would have been discarded, and I hate to even

use that word; I really do, but, for lack of a better one. Does that

make a difference to you? In other words, if the couple made a decision that they had all the children that they wanted to have, that

they no longer wanted this embryo to exist, and they decided and

they said to the clinic, ‘‘Look, we want to do away with—we want

you to just get rid of these embryos,’’ would that make a difference

to you, in your opinion, the opinions that you’ve expressed today

with regard to stem cell research?

Ms. DAVIDSON. Well, I would certainly be heartbroken that they

decided to not give their child an opportunity to be born. I couldn’t

stand between them, obviously, to stop them from doing anything

with their embryos, but I would certainly want to know that they

were given all the options available to them. I can tell you, countless embryos have been destroyed that would have been placed for

adoption had this program been established earlier. We have many

families who contact us and say, ‘‘We just found out about you.

We’ve been suffering and deliberating what choice we were going

to make regarding our embryos for weeks, months, and years. We

finally have an option that we can work with.’’

So I know that many families have made decisions and gone on

and destroyed embryos or donated for research that maybe, had

they had this opportunity in the past—we’ve only been offering this

program for 4 years. There’s only been really coverage and knowledge about our program for the last 21⁄2, 3 years, as the program

has been developing.

But I think that I would absolutely be heartbroken to know that

they did not know all their options before they chose that.

Mr. CUMMINGS. Thank you very much.

Ms. DAVIDSON. Thank you.

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Mr. SOUDER. I would like to clarify, Ms. Davidson, in answer to

Congressman Cummings’ question, do you as an adoption agency

have a time limit or have you ever been told that there is any time

limit for the storage of the frozen embryonic children? Like, for example, if one was 10 years old, would that make any difference to

you? Do you know any scientific limitations at this point that your

agency’s ever been made aware of?

Ms. DAVIDSON. The scientific evidence that we do know of is that

animal embryos have lived up to 25 years in storage, and that’s the

longest that technology has existed. That’s the longest one that’s

been stored. They don’t differentiate between that understanding of

that information and humans, meaning they believe human embryos can last indefinitely in storage. It’s not the storage time that

affects them. It’s the thawing and the freezing that is actually detrimental to the embryo.

Mr. SOUDER. Thank you.

Ms. DAVIDSON. I’m sorry, to continue, we don’t differentiate. We

don’t have a time period where we cutoff saying any embryos older

than such a date would be not willing to be placed through our embryo program.

Mr. SOUDER. Thank you. Congresswoman Davis is next. I am

going to ask Congressman Weldon to take the chair again.

Mrs. JO ANN DAVIS OF VIRGINIA. Thank you, Mr. Chairman.

Again, I would like to thank you all for coming and testifying.

I would like to just say one thing. We heard from several Members here that we shouldn’t stand in the way of science and research for stem cell research. I will speak for myself, and I think

the bulk of us up here: We’re not against stem cell research. It’s

the embryonic stem cell research. So the scientists can certainly do

whatever they want with adult stem cells and anything else.

Ms. Davidson, my question to you is that Ms. Joan Samuelson,

who is going to testify on our second panel, states in her testimony

that, ‘‘No one can credibly argue that more than a small fraction

of those embryos presently in storage would ever be adopted.’’ Can

you comment on that statement?

Ms. DAVIDSON. Well, our program grows exponentially. We see

an increase—between 1999 and 2000, we had a 600 percent increase in the adoption placements that we did. It’s still relatively

small numbers in the grand scale, but I think a lot of the statistics

are based on donor programs. You’ll hear people say, well, only 5

percent of families in donor programs, in fertility clinics, are willing to participate in a donor program. Donor program and adoption

are very different. The adoption program allows the family to select

an adopting—it allows them to define what type of family their

child will be placed with. That’s not an option in the donor program. They’re also allowed to have contact with the family. They’re

also allowed to know if a child or children were born to this program. These are all options available through adoption that aren’t

available through donor programs. So when somebody quotes the

statistics of donor programs from a fertility clinic, they’re not talking about adoption. They’re a very different type program.

Mrs. JO ANN DAVIS OF VIRGINIA. I would like to go back and see

if I can clarify something. I think when the gentleman was asking

about the cost for adopting an embryo, you said roughly about

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$3,500. I guess this question is for you two. You might know this.

Does hospitalization cover your carrying the child?

Ms. BORDEN. Yes.

Mrs. JO ANN DAVIS OF VIRGINIA. As if it were any other pregnancies?

Ms. STREGE. Right.

Mrs. JO ANN DAVIS OF VIRGINIA. OK. Then my question is, this is roughly $3,500, and I guess I have heard statistics that the cost

of adoption runs between—the reason a lot of people don’t adopt is the cost runs between $10,000 to $20,000, is that correct?

Ms. DAVIDSON. It does on the East Coast.

Mrs. JO ANN DAVIS OF VIRGINIA. OK.

Ms. DAVIDSON. At our agency our fee for a domestic adoption is only $8,000.

Mrs. JO ANN DAVIS OF VIRGINIA. OK, but even at that, at $8,000,

and you’re saying $3,500 here. So this might be an opportunity for

more families, more couples, to adopt children who right now can’t

because they can’t afford the high cost of adoption.

Ms. DAVIDSON. They also have medical expenses that they have

to pay for separately. We wanted to set our fees where it was financially viable for a family to go through this process.

Mrs. JO ANN DAVIS OF VIRGINIA. Right.

Ms. DAVIDSON. Once they’ve paid our fees and done their home

study and paid their clinic to provide the frozen embryo transfer,

they’re looking at about $7,000 if they get pregnant on the first try, maybe $9,000 on a second. Again, that’s still much below the IVF,

the in vitro fertilization process of harvesting, fertilization, and

doing transfers, which I think the average is about $17,000.

Ms. DAVIDSON. Did your insurance cover it?

Ms. BORDEN. My insurance ended up covering a lot more than I

thought they would.

Ms. STREGE. My insurance did not because our initial physician

would not participate in this. So we had to go outside of our plan

and pay for it.

Mrs. JO ANN DAVIS OF VIRGINIA. I think I have time for one more

question. This would be for you two moms. The pharmaceutical

companies and many scientists would like free rein and taxpayer

funding to destroy embryos for research. What would you say to

the pharmaceutical lobbyists who have been demanding Federal

funding on embryo destructive research? If they were to come into

your offices—and they come into ours—what would you say to

them?

Ms. STREGE. I would say to look at my daughter and tell me why

she’s expendable.

Ms. BORDEN. Just like my husband stated earlier, which son

would you kill?

Mrs. JO ANN DAVIS OF VIRGINIA. Thank you, Mr. Chairman.

Mr. WELDON [assuming Chair]. The Chair now recognizes the

gentlelady from Illinois, Ms. Schakowsky.

Ms. SCHAKOWSKY. Thank you, Mr. Chairman, and thank you for

your testimony, all of which I heard, by the way. I was in a side

room listening to it all, even though I wasn’t right here.

I just have a comment. I would say that you have beautiful children. You’re blessed. All of us I think are blessed with the birth

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of your children: the result of wonderful scientific research. I support the adoption program. I think that is a good program. I think

it is an option that more people would know about. But it is one

option that science has provided. I feel that presenting it as an either/or situation is not the real choice that we have to make.

I mean a hearing about this program is wonderful to have, and

I think more people that hear about this, the better. But to say,

then, that this precludes the use of embryos that are, in fact, regardless of whether or not there is this option, many will be destroyed, and that those could be used to save lives is what the essence of this hearing is about—not to say that you shouldn’t have

your children or that those opportunities shouldn’t be available.

Your children are not expendable, but there are situations where

those embryos will be destroyed regardless of your programs and

that we can save existing lives; we can save children that have juvenile diabetes. You know the whole litany, the diseases.

Yes, we should talk about adult stem cell research, explore it as

far as we can. That is the wonder of scientific research right now.

I just would say to you—and I am not asking for a response, but

what I am saying to you is: Promote this program. It is a great program, and the option that you took should be available to others.

Don’t use it to preclude life-saving opportunities for others.

Thank you.

Ms. DAVIDSON. May we respond?

Mr. WELDON. Yes, go ahead.

Ms. DAVIDSON. Because I would definitely disagree. These children are not a product of some wonderful medical research. They’re

a product of the fact that a huge problem exists, that too many embryos have been created. These children were not created as wonderful new research. They were created as live children. This program does not exist to provide opportunities for new families to

have children. This program exists to solve a problem that exists,

and that’s 188,000—conservative number—188,000 embryos that

are in storage. I think there’s a problem that we have that many

children existing in clinics. This program is not here to provide a

new way for families to get children. It’s here to eliminate a problem that currently exists, in that there are children waiting to be

born. It’s no different than an orphanage, an orphanage that has

never been really looked at as a really neat opportunity for somebody to add children to their families. It’s been seen as a travesty

that these children are not being parented.

Mr. WELDON. The gentlelady yields back. The Chair will now

yield to himself.

I just want to reiterate a point that I made in my opening statement. It has been claimed that embryo stem cell research holds

great promise, but when I look at the medical literature, I think

it is highly speculative to make that kind of a statement. They do

not, even as of yet, have an animal model where they have taken

a rat or a mouse with a disease and taken an embryo stem cell and

effectively treated that disease.

In the case of diabetes mellitus, juvenile diabetes mellitus, a

model of that exists. There’s a strain of mice that you can purchase, research labs can purchase, that are all diabetic. Adults

themselves have been used to cure mice with that condition of their

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diabetes mellitus. The attempt to duplicate that research using embryo stem cells failed.

The other additional point I want to make—and it is really a

very critical point from a scientific perspective—is that embryo

stem cell research has a potential huge problem, even if it were

ever proved to be successful, of tissue rejection, whereas using

adult stem cells from the patient is a way around the tissue rejection issue. So I think it is exaggeration to say that there is great

potential for embryo stem cell research. I think it is not an exaggeration to say there is great potential for adult stem cell research.

I have a quick question for both Lucinda and Marlene. This was,

I think, a pretty revealing thing for you to do, to come all the way

to Washington and tell your personal story, as you have, in front

of the TV cameras. I would assume neither of you have ever done

anything of this sort before.

Could you just comment on what motivated you to agree to come

and testify in this kind of an environment and get yourself and

your family involved in a debate like this?

Ms. STREGE. You know, I guess for me I’ve seen these debates

on C–SPAN at home, and no one is talking about infertility as a

valid diagnosis. This is what needs to happen here. These embryos

need to be adopted, and I just wanted, I guess, Americans to know

that this is an option, because the media has been saying, well,

they’re just going to be destroyed anyway, that type of thing.

Also, we wanted to come here and meet with the President, too,

so he could see our children and see that these are real people,

these children.

Mr. WELDON. Are you scheduled to meet with the President?

Ms. STREGE. Well, we’re here. [Laughter.]

We haven’t had anything set up so far. So do you have any connections? [Laughter.]

Mr. WELDON. Well, I have been trying to get an appointment myself, and I haven’t been able to get one. So I guess get in line.

[Laughter.]

Lucinda, did you want to add to that at all?

Ms. BORDEN. For me, it was basically about the fact that all you

hear is there’s only the option of destroying or donating to science.

Those don’t respect the life that embryos are; adoption does. We

wanted, I wanted people to know that this is out there and that

my children came and were born through adoption, and that this

option is a better choice in respect of the life that the embryos are,

rather than manipulating them for research.

Mr. WELDON. I realize Matthew and Luke are kind of young.

Ms. BORDEN. Mark and Luke.

Mr. WELDON. Excuse me.

Ms. BORDEN. Everyone does that though.

Mr. WELDON. Mark, I’m sorry. Hannah is, I would assume, too

young to have a comment at all? Does she understand any of this?

Ms. STREGE. Did you want to say anything, Hannah?

I can tell you, though, that for the last couple of nights we’ve

been really kind of busy, and so I asked her kind of, ‘‘What do you

want to pray for tonight?’’ And 2 nights in a row she said, ‘‘For the

Snowflakes, Amen.’’ So I guess that would be her comment.

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Mr. WELDON. Thank you. The Chair now recognizes the

gentlelady from New York, Mrs. Maloney.

Mrs. MALONEY. Thank you, Mr. Chairman, and I want to congratulate and applaud really all of the panelists for your very moving and informative statements today. I would also like to applaud

the advance of science that has enabled us to have in vitro fertilization, that has enabled us to help families.

I want you to know that I am a co-sponsor of a bill by Representative Weiner called the Family Building Act, which would expand

insurance coverage and funding and grants for families who want

to follow the route of in vitro fertilization. I want to help these families in any way possible, and I also want to help other children

with juvenile diabetes or other diseases with medical research.

I would like to really place into the record an analysis by the

NIH—many of the items in it were sent to President Bush—which

really states in so many words that the embryonic research is far

more promising in the future than adult stem cell research. I support adult stem cell research and embryonic, but I think their

statements about the promise for the future for healing juvenile diabetes, Parkinson’s, and others is very, very promising.

I would like to really ask Ms. Davidson—and you have commented about your program, and I certainly support, as I said, this

bill, the Family Building Act. It would help clinics such as yours,

help other families. But some parents do not wish to donate all of

their frozen embryos for adoption. Would you favor forcibly taking

frozen embryos against the wishes of the parents and requiring

them to donate them for adoption?

Ms. DAVIDSON. Absolutely not.

Mrs. MALONEY. You would not support that?

Ms. DAVIDSON. I wouldn’t force anyone to give their children to

somebody else, but I also wouldn’t want them to destroy them.

Mrs. MALONEY. Well, now they can either freeze them and keep

them for the future in case they want to have more children, correct?

Ms. DAVIDSON. Yes.

Mrs. MALONEY. They can donate them to other families and help

them have children or they can donate them to science. From what

I have read from various documents, there is an excess of embryos,

much more than the demand for adoption and much more than the

demand for people who think maybe 5 years from now I might

want another child; let’s keep this embryo frozen. But for those embryos that really will be discarded, would you object to them being

used for solving some of the illnesses that society confronts?

Ms. DAVIDSON. Well, first of all, I don’t think that there’s such

a number that they couldn’t be placed for adoption. As I stated in

my testimony, there are an estimated 12,000 to 35,000 kids that

could be placed for adoption through this program.

Mrs. MALONEY. Are they on the waiting list at your program?

Ms. DAVIDSON. No, they’re not.

Mrs. MALONEY. Well, I think that we need to get to the facts because, what I’ve read, that they’re not there; that these embryos

are there and people could access them if they so wished to have

additional children.

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Ms. DAVIDSON. And the number grows exponentially on a daily

basis, the number of families that do sign up for the program.

Again, I think it’s a lot of education. There are a lot of clinics that

don’t have this information to provide to their clients, and it’s very

different than a donor program.

Mrs. MALONEY. Well, then, let’s say, after the education, say we

have passed the Family Building Act and have the funding to help

the families have in vitro fertilization and help with the expenses

of it, and there’s still hundreds of thousands of embryos that are

not being used.

Ms. DAVIDSON. I’m certainly for education. I think people need

to understand what research looks like. I think people need to understand, when they donate their embryos for research, what occurs in the research labs. We talk about regulating what happens

in a lab. I’m certainly happy to quit my job here and go be a policeman in a lab somewhere and say, ‘‘Nope, you can’t do that any further because that’s against legislation.’’ But I can absolutely see

the slippery slope that we’re on, that as soon as we say, yes, it’s

OK to do this, then they grow them for a week; then they grow

them for 2 weeks; then they grow them on beyond that.

Research, for most people, they don’t even understand that. I am

pro-education. Teach people all their options. Teach them what research looks like. When I heard that an embryo had grown outside

of the womb in another country up to 19 weeks, I think a family

who donates their embryos to research needs to know that their

child may be grown up to 19 weeks outside the womb and then experimented on. I think people need to be educated. I think if people

were truly educated about what research on an embryo would look

like and feel like and be like for that child, they probably wouldn’t

decide that. Again, I’m very pro-education. I can’t force a family to

not chose to kill their children. I can’t force a family not to select

to let their embryo just die naturally or to place it in a research

program, but I want them to know what their options are before

they make that choice.

Mrs. MALONEY. Well, certainly a Federal role would help with

your goals, which I support, of having standards, that everyone

knows what they are. I predict that we probably agree more than

we disagree. Personally, I don’t support cloning and I don’t support

growing—as you mentioned, I support the embryonic research from

the stem cells from the very beginning, which is what the guidelines are now. If we don’t have Federal standards, then some of the

things that people are concerned about may happen. So I think it

is important that we have Federal standards that really put into

place safeguards on some of these ethical problems or ethical challenges that you are putting forward.

Ms. DAVIDSON. And I hope that we can actually regulate private

industries. We’ve done that a lot in the past, and maybe the government can step up and regulate the private industries that are

doing research. But the issue here is: Are we going to federally

fund this? And that’s a bigger issue, and I am not for spending my

tax dollars to fund the private agencies or private research facilities. I would encourage everyone who has a heart for donating for

this research to do it out of their pocket, to definitely find—I mean,

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cific for the private funding for the private research facilities.

Again, we’re talking regulation of private industry. We can do that

if——

Mrs. MALONEY. But wouldn’t a Federal role—— Mr. WELDON. The gentlelady’s time has expired.

Mrs. MALONEY. I thank the gentleman. My time has expired.

Mr. WELDON. The gentleman from New Jersey, Mr. Smith, is recognized for 5 minutes.

Mr. SMITH OF NEW JERSEY. Thank you, Mr. Chairman. I will

keep it very brief, and I do thank you for yielding.

I want to thank our two families and the lady who has testified

on behalf of Snowflakes Adoption for the extraordinary testimony

you have provided. I have been in Congress 21 years, and I am not

sure I have ever heard such compelling and such heart-warming

information, that these tens of thousands of cryogenically frozen

embryos have a fate other than destruction, destruction where they

are just poured down the drain or destruction where they have

their stem cells taken from them and they are killed. That, to me,

is not a choice.

All of our legislation in the past that dealt with human subjects

always tried to say that informed consent was required, and obviously, for anyone prior to birth informed consent or most children

is very hard. Guardians, being parents, should be acting in their

best interest. But when we passed the legislation, Mr. Chairman,

back in the early 1980’s—and I think this needs to be stated—one

of those abuses by the National Institutes of Health and other researchers, for whom I in most instances have an enormous amount

of respect, was a program whereby women who were intending on

aborting were getting injected with the rubella virus or vaccine, I

should say, and then when the baby was aborted later on, there

was a determination whether or not chromosomal damage had occurred. That kind of human experimentation is outrageous. It is

reminiscent of the kind of experimentation that has been done in

other cultures.

We fought a war against a regime that felt that there were certain human beings who could be subjected to human experimentation that did not benefit them, but would benefit the whole of humanity, and, thankfully, their eugenics policy was roundly repudiated. But we see vestiges of that still in our research community,

and we saw it with that NIH experiment, or experiments, with

those children who were intended to be aborted.

That led to the legislation in the early eighties to protect human

subjects, including the unborn and preborn. It seems to me that the

application here is very clear and compelling. We now know, as a

result of this hearing and your brave testimony, that there is an

option of adoption. It’s a pro-life, pro-family alternative to killing.

My hope is that we will move very aggressively to make more

Americans knowledgeable who have embryos in a frozen state that

this is available.

You know, the previous speaker mentioned there is more than

what is demanded for adoption. Nothing could be further from the

truth. There are hundreds of thousands of couples who would like

to adopt and can’t in America. The waiting line is usually years,

not measured in months or even a couple of years now, but in mulVerDate 11-MAY-2000 11:24 Mar 26, 2002 Jkt 000000 PO 00000 Frm 00103 Fmt 6633 Sfmt 6633 C:\DOCS\77248.TXT HGOVREF1 PsN: HGOVREF1
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tiple years, sometimes as much as 6 to 8 years in order to obtain

a child, to make an adoption plan for a child.

At the core of our adoption law, as well as the Hague Convention

on Intercountry Adoption, is that whole concept of best interest of

the child. It seems to me that we need a little more of that in this

debate about these frozen embryos. What is in the best interest of

those frozen embryos, all of whom have a great potential to grow

and to be nurtured, to have a first date, to play soccer, to do all

the things that we all come to take for granted, rather than saying

those going down this aisle, they are for experimentation; those

going down this aisle—and that is all left to the whim and caprice

and decision of the families. It seems to me we need to have

more—they are not property. There is a guardianship rightly by

the parents, but they are not property that can be killed at will.

It seems to me the utilitarian ethic that has been talked about

today does start us down a slippery slope because I noticed that

Senator Hatch said how he is troubled by the work that is going

on in the Jones Institute for Reproductive Medicine, where they are

creating embryos. Why? If embryos are ‘‘expendable’’ and can be

used for this purpose, then why not, if they are created for that

reason or if they are in a cryogenic tank and it is in excess, to use

the word of the day, of what the parents’ needs are? It seems to

me that they either have innate value or they don’t, and we should

be moving in that direction to protect them.

Let me also say—and this was mentioned by my colleague from

Virginia, Ms. Davis—Ms. Samuelson in her statement, and I think

this needs to be very much debated and discussed. ‘‘No one can

credibly argue that more than a small fraction of those presently

in storage would ever be adopted.’’ Well, that is because nobody

knows about it. The sooner that changes, the sooner that the genetic parents know about this, the better.

Thank you, Mr. Chairman, and I know my time is up. But I want

to thank you so much for coming because, again, I think this is the

turning point in this debate. What you have done on behalf of your

children and their brothers and sisters yet to be born will change

the entire nature of this debate, and I thank you.

Mr. WELDON. I want to thank the panel for their testimony. Your

response to the questions has been most interesting. Thank you so

much for providing the human side to this debate. Thanks for coming so far.

I would like the witnesses in the second panel now to please step

forward. The witnesses on the second panel will include Nathan

Salley, a leukemia patient; Mollie Singer, Juvenile Diabetes Research Foundation; Joan Samuelson of the Parkinson’s Action Network; David Prentice, PhD, Indiana State University; Carl Hook,

MD, with the Mayo Clinic, and Gerald Fischbach, MD, of Columbia

University.

I would ask that you all remain standing so we can administer

the oath. Do we have everybody here?

OK, it looks like we have two Ms. Singers. Is that right? Mollie

and Jackie? Are they both going to provide testimony? Is that

right? OK, great.

[Witnesses sworn.]

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Mr. WELDON. Let the record show that the witnesses have all answered in the affirmative.

Please be seated.

We will now recognize the witnesses for their opening statements. I would like to thank them again for being here today. I

would again ask that you limit your opening statements to 5 minutes and include any fuller statements you may wish to make in

the record.

Mr. Salley, do you have an opening statement to give? You are

recognized for 5 minutes.

STATEMENTS OF NATHAN SALLEY, LEUKEMIA PATIENT; MOLLIE SINGER, JUVENILE DIABETES RESEARCH FOUNDATION;

JACKIE SINGER, JUVENILE DIABETES RESEARCH FOUNDATION; JOAN SAMUELSON, PARKINSON’S ACTION NETWORK;

DAVID A. PRENTICE, PROFESSOR OF LIFE SCIENCES, INDIANA STATE UNIVERSITY, AND ADJUNCT PROFESSOR OF

MEDICAL AND MOLECULAR GENETICS, INDIANA UNIVERSITY SCHOOL OF MEDICINE; C. CHRISTOPHER HOOK, MD,

MAYO CLINIC; AND GERALD D. FISCHBACH, MD, DEAN OF

THE FACULTY OF MEDICINE, COLUMBIA UNIVERSITY

Mr. SALLEY. My name is Nathan Salley. I am 16 years old and

will be a junior next year at Faith Christian Academy. I live with

my sister Meaghan and parents, Mark and Leslie Salley, in Arvada, CO. My father and mother are with me today.

I am living proof that there are promising and useful alternatives to embryonic stem cell research.

Mr. WELDON. Nathan, could you just pull that mic a little bit

closer?

Mr. SALLEY. Yes.

Mr. WELDON. Just a little bit closer. That’s great. Thanks.

Mr. SALLEY. OK. I’m living proof that there are promising and

useful alternatives to embryonic stem cell research and that embryos do not need to be killed to achieve medical breakthroughs.

My story begins at age 11 when I was ill for several months. My

mother took me to doctors who told me that I was a victim of tonsillitis, fatigue, and infections. They were dead wrong. When I was

finally checked for mononucleosis, they found something much

worse. On March 4, 1997, I was diagnosed with acute myloid leukemia. The disease was at an advanced stage by the time of diagnosis.

For an exhausting 18 months I had chemotherapy for 86 to 94

hours each month and endured repeated spinal taps and bone marrow aspirations to check my progress. I lost my hair, energy, and

appetite, but I tried hard to do as many things as I could, for life

to be as normal as possible. Between chemotherapy treatments, I

tried to play soccer and keep up with school.

Since being diagnosed more than 4 years ago, I have spent nearly 6 months as an in-patient at the hospital and made nearly weekly visits to this day as an out-patient. I missed much of school from

sixth to ninth grade, and just when I thought the treatments were

over and I was cured, I had a relapse.

Doctors informed me at age 14 that I needed a bone marrow

transplant. They gave me three options: receive the bone marrow

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from a donor relative, an unrelated donor, or cord blood. We found

that nobody in my family was a match. We were ready to go ahead

with the transplant from an adult donor who had what they call

a 5 of 6 match with my proteins. However, at the last minute, a

6 of 6 matching cord blood unit from Spain became available.

Physicians assured us a cord blood transplant was my best

chance for life. Dad signed consent forms for me to participate in

the procedure. The forms said, ‘‘umbilical cord blood transplantation has been performed mainly in small children and one of the

purposes of this study is to determine whether it can be performed

safely in larger people.’’ At 14, I was among the oldest children to receive a transplant

from an umbilical cord. More cells were going to be needed than

were available in the cord blood unit. So the doctors told us about

a second experimental procedure they felt should be used to expand

the number of donated cord cells. We agreed and signed more medical consent forms.

Before the transplant could take place, I had to completely kill

my own leukemia-producing marrow with 3 days of total body radiation, followed by even more intense chemotherapy. Then the

transplant took place in two phases. I received about 60 percent of

the donated cord blood cells on June 29, 1999, when they arrived

from Spain. The remaining cells were sent to the lab to be expanded. I was transfused with these cells 10 days later on July 9,

1999.

It was an agonizing wait for my blood counts to begin to recover.

Thankfully, I am in complete remission today. Regular blood tests

continue to show no leukemia present in my body. The transplanted cells have built a brand-new marrow system and immune

system for me.

When my transplant was performed by the doctors at Children’s

Hospital in Denver, I was just 1 of 7 patients to receive a cord

blood transplant in 1999, and only the 13th person since the first

cord blood transplant there in 1996.

As a result of this ground-breaking procedure, I am proof that

the medical community does not need to destroy life to save it. I

am told that the same cord blood stem cells that saved me are likely cures for other life-threatening diseases. People disagree about

whether research using embryo stem cells also may yield medical

benefits, but no one disputes that such research destroys embryos.

I am not a doctor, scientist, or theologian, but speaking as one

cancer survivor who benefited from a cord cell treatment, it does

not seem right to me to terminate living human embryos based on

mere speculation that they could lead to cures when obvious alternatives are not yet exhausted.

All human life is fearfully and wonderfully made. My life is no

more valuable before God than the life of an embryo. Everyone

wants to live a complete and healthy life, but I do not believe killing a life to save it is right. Who, besides God, knows what an embryo may become? What we do know is that performing research

on a 4-day-old embryo will ensure that it never becomes a 5-dayold embryo, much less a 25-year-old soccer player, a 30-year-old

actor, a 50-year-old Congressman, or a 91-year-old former President.

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Somehow the opportunity came to me from among countless others to be here today and tell my story. I have benefited from, and

participated in, research on umbilical stem cells. Am I thankful to

be alive today? Yes. Am I thankful that brilliant doctors and researchers discovered a treatment for my disease? Absolutely.

Would I want human embryos unnecessarily killed when alternative research methods exist today? No.

So I urge this committee—and President Bush—not to allow taxpayers’ money to fund destruction of live human embryos. Thank

you.

[The prepared statement of Mr. Salley follows:]

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Mr. WELDON. Thank you, Nathan. We will now hear from Dr.

Gerald Fischbach.

Dr. FISCHBACH. Thank you, Congressman Weldon, Congressman

Cummings, and other members of the committee, for inviting me

to appear before you and address these very promising medical

therapies and difficult ethical issues. I am the dean of the faculty

of medicine at Columbia University and past director of the National Institute of Neurological Disorders and Stroke.

Degenerative disorders are associated with the loss of cells. Cells

in the pancreas that make insulin are lost in juvenile diabetes.

Neurons that make dopamine are lost in the brains of patients

with Parkinson’s disease. Heart cells that pump blood are lost following an acute myocardial infarction. We have medicines that

treat symptoms of degenerative disorders, but none of them stops

the degeneration process itself, and none can replace the lost cells.

Stem cells offer a new type of therapy in which damaged cells

are replaced and tissue repaired. Stem cells are very unusual cells.

They are capable of self-replication and on cue they send out

branches, so to speak, along different developmental pathways to

form different types of cells. In that sense, they really are stem

cells.

Three years ago was the first publication of the isolation of

human embryonic stem cells, and the possibilities of expanded

therapy with stem cell biology. It’s remarkable, therefore, that we

are in the midst of a debate that threatens to terminate research

on embryonic stem cells, which many believe to be the most promising of all stem cell types.

The issue before the President and the public is whether government funds should be used to support research on human embryonic stem cells. It is not about government support for the derivation of the cells, a process that involves destruction of the embryos.

Government-funded experiments on human embryos were prohibited in 1995. Recognizing this prohibition, but also recognizing the

great potential of embryonic stem cells, the NIH issued guidelines

last August that place severe restrictions on the methods of stem

cell derivation. A working group composed of scientists, patients,

ethicists, clinicians, and lawyers drafted the guidelines. They were

subject to intense scrutiny, including congressional hearings, advice

from the National Bioethics Advisory Commission, and publication

in The Federal Register. Nevertheless, the debate continues and it

has escalated since President Bush suspended the guidelines pending further review.

The guidelines should inform our debate about stem cell research. They state, ‘‘Researchers applying for NIH funds must provide assurance that the cells were isolated without Federal funds

from embryos created for fertility treatment and that are no longer

needed by the donors. At this early stage, the embryo is a hollow

sphere containing about 100 to 200 cells, described as a pre-implantation embryo. Second, donation of an embryo must be voluntary with no financial inducements offered. Third, there must be

a clear separation in time between the decision to create the embryo and the decision to donate.’’

The guidelines apply only to work supported by the Federal Government, but we should make no mistake about it: This research

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is superb and it has an enormous impact on the private sector

throughout the world. Indeed, the NIH guidelines are our best

chance for monitoring the activity of private enterprises that might

use embryos from other sources. It is better to train the spotlight

of public scrutiny on embryo research than to allow this work to

go on behind closed doors.

Alternatives to NIH guidelines have been discussed, but in my

mind they are inadequate. One plan calls for the exclusive use of

stem cells derived from adult tissues. However, the prevailing opinion of scientists in this field is that stem cells from adult tissues

do not proliferate as robustly in tissue culture and they do not exhibit the same diversity of offspring as do embryonic stem cells.

Both characteristics are essential for effective stem cell therapy.

Another alternative to NIH guidelines would allow research on

human embryonic stem cells, but only those 10 or so cell lines that

already exist. Unfortunately, this would cripple stem cell research.

Cells from embryos are not all identical, and the same line may not

be optimal for all disorders.

In sum, it is unethical in my mind to hold back our best efforts

to help millions of Americans who suffer with rapidly progressive

degenerative disorders. We do not have the knowledge or the time

to suspend promising areas of research and continue this work

with one hand tied behind our backs.

[The prepared statement of Dr. Fischbach follows:]

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Mr. WELDON. Thank you, Dr. Fischbach. We will now hear from

Dr. David Prentice.

Dr. PRENTICE. Thank you, Mr. Chairman. Before my time starts,

I might note for the record that during the Members’ opening statements it tended to put the children to sleep; it’s now the scientists’

turn to do the same for the Members.

Mr. Chairman, Congressman Cummings, distinguished Members,

many here support stem cell research. So do I. I don’t know of anyone who does not support stem cell research. But the use of Federal

funds to support human embryonic stem cell research is illegal, unethical, and unnecessary. Adult and other post-natal stem cells

have vast biomedical potential to cure diseases such as diabetes,

Parkinson’s, heart disease, and other degenerative diseases. This

biomedical potential is as great as, or greater than, the potential

offered by human embryonic stem cell research.

Simply stated, adult stem cell research is a preferable alternative

for progress in regenerative medicine and cell-based therapies because it does not pose the medical, legal, and ethical problems associated with human embryonic stem cell research. Current Federal

law enacted by Congress is clear in prohibiting research in which

a human embryo or embryos are destroyed, discarded, or knowingly

subjected to risk of injury or death. Human embryonic stem cell research requires the destruction of live human embryos to obtain

their stem cells. It is a mistaken notion to think that there can be

any meaningful separation between destroying the embryo and research that relies on this destruction. It is ethically wrong to harm

or destroy some human lives for the potential benefit—and it is

only a potential benefit—of others. This violates the basic tenet of

the healing arts: First, do no harm.

The evidence indicates that the research is neither necessary nor

ethical. Embryonic stem cell research takes a utilitarian view of

human embryos: useful for a purpose and not valued in and of

themselves. They are not viewed as people, but as property, a commodity. Dr. Erwin Chargaff, a renown biochemist, characterizes

this attitude as ‘‘a kind of capitalist cannibalism.’’

The scientific record establishes that claims regarding the purported shortcomings of adult stem cells are not true, are not relevant to their therapeutic potential, and/or overstate the differences between adult stem cells and embryonic stem cells. Significantly, adult stem cells do exhibit pluripotency and they have the

ability to transform from one cell type into another functional tissue. Moreover, an impressive volume of scientific literature attests

to the fact that human adult stem cells, unlike human embryonic

stem cells, are currently being used successfully with patients to

combat many of the various diseases that embryonic stem cells only

prospectively promise to treat, such as multiple sclerosis, lupus,

various types of cancers, and cartilage diseases in children.

Animal research strongly suggests that more therapeutic applications of adult stem cell research will follow, including treatments

for diabetes, Parkinson’s, stroke, heart disease—to name a few. In

sum, the scientific record indicates that the alleged shortcomings

perceived in adult stem cell research either are illusory or will be

overcome.

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Finally, the potential biomedical application of embryonic stem

cell research faces significant risks such as the tendency toward

tumor formation as well as instability in gene expression, and embryonic stem cells face the very real possibility of immune rejection, while use of a patient’s own adult stem cells is free from this

problem. Hence, adult stem cells have many advantages as compared with embryonic stem cells for practical therapeutic application.

Thus, contrary to suggestions by supporters of human embryonic

stem cell research, Federal funding of such research is not a necessary nor even a wise use of limited taxpayer dollars. Indeed, embryonic stem cells have not even shown their efficacy in animal

models. Adult stem cell research is more promising, is demonstrably more successful at producing beneficial treatments that are

actually in use today, and does not present the significant problems

and uncertainties posed by human embryonic stem cell research. A

viable, less morally problematic alternative to embryonic stem cells

does exist. Adult and cord blood stem cells are making good on

what are only promises of embryonic stem cells.

Thank you, Mr. Chairman.

[The prepared statement of Dr. Prentice follows:]

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Mr. WELDON. Thank you, Dr. Prentice. We will now hear from

Joan Samuelson.

Ms. SAMUELSON. Thank you. I think my job today is, using the

same phrase that was used earlier, to put one of the human faces

on this side of the debate, as you guys will. A lot of what I was

going to talk about has been talked about at great length by many

other witnesses and questioners. So I am going to try not to repeat

things that have been said, but I think it’s vitally important that

this committee, as best it can, tries to stand, if only briefly, in our

shoes. Many of you probably already do, having loved ones with the

many disorders that could be helped by stem cell research, and I

recognize that, but I think it’s important that I share both my

thoughts and my feelings.

Frankly, when I came in at the beginning of the hearing I had

lots of thoughts going through my head, but at this point I’ve really

come full circle and what I want to share most is the feelings. Because listening to this discussion, I’m sad and I’m scared.

Why am I sad? This has been a rough month at the Parkinson’s

Action Network because almost all of the people who work with us

and our board of directors struggle with this disease and live the

consequences, and this is a particularly bad month. Our Education

Advocacy Director is here, John Rogers, and John buried his dad

last week. John believes, as do I, that if this research had been aggressively funded from years ago when it was identified as having

promise, his dad might be alive today.

In the room, at the end of the front row, is Milly Kondracke, my

good friend and wife of Morton Kondracke, Washington columnist,

who has just recently written this book, ‘‘Saving Milly.’’ It’s about

Milly. It’s about his love for her. It’s about Milly’s struggle with

Parkinson’s, and the last chapter is called, ‘‘Losing Milly.’’ Milly has not been able to swallow whole food for the last 2

weeks, and she’s going on a feeding tube tomorrow. I pray that

Milly is going to be around when this cure is ready, and I believe

that it will be failure not of science if she’s not. If we’ve lost her,

it will not be the fault of science and the brilliant researchers in

our country. It will be a failure of politics and a lack of a Federal

investment in this disease.

The scientists tell us this isn’t an incurable disorder anymore; it’s

a curable one, but the investment is not being made. And why? Is

it really for any good reason? That’s what torments me.

The scare part comes because I think the reason I was asked to

testify is I’m really on that cusp. I’ve had Parkinson’s for almost

15 years, diagnosed 14 years ago, and I, as was Milly—we were diagnosed at almost exactly the same time. For whatever reason—

and we don’t understand it—Milly has progressed a lot faster than

I.

I still respond to that other medical miracle called L-dopa, the

pill that we pop that replaces this missing dopamine that’s lacking

from the brain cells that have deteriorated. When I woke up this

morning, like every morning, I was almost frozen stiff from my

Parkinson’s symptoms, and I was able only to reach over to the

bedside and take a pill and put it in my mouth with a little water,

and, hallelujah, like other mornings, within 45 minutes I was able

to move.

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I know without brain repair, without this research, the day will

come that, however many of those pills I take, I will not be able

to move. Like Milly, I will be in a wheelchair. Like Milly, I will not

be able to speak, and like Milly, I will be having great difficulty

swallowing, and at some point that is the likely thing that will

cause my death.

The scientists tell us this research is crucial to our rescue, and

they tell us, as Dr. Fischbach did and as the brilliant scientists

that I quote—and I’ve got two letters attached to my testimony— that embryonic stem cell research is, indeed, vital to our rescue,

that adult stem cells are not going to do the job by themselves.

So I simply have to implore you to stand in our shoes and ask

these questions: What if not every embryo out there in the freezer

can be adopted? I completely agree that we should draft regulations today that enthusiastically encourage every donor couple to

consider adoption of those embryos. I think that’s one of these wonderful modern-day miracles. But what if some of them are going to

be discarded? And the reality is embryos were discarded today;

they were discarded yesterday; they’re going to be discarded tomorrow. And they’re not helping rescue us.

How can we live with that? What if adult stem cells aren’t

enough? What if we just go down that path and 5 years from now

it proved they weren’t enough and that we needed the embryonic

stem cell research? I don’t know that I can hang on that long? I

pray Milly can. I pray for the other million of Americans with Parkinson’s and the people with all the other diseases—juvenile diabetes and Alzheimer’s and spinal cord injury and the rest—that could

be close to a cure.

Please think about that. I implore the President to think about

that and stand in our shoes as he contemplates this decision and

to make a decision soon, and I implore all of you and the rest of

Congress to do the same. Thank you.

[The prepared statement of Ms. Samuelson follows:]

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Mr. WELDON. Thank you, Ms. Samuelson. 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

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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.

[The prepared statement of Ms. Jackie Singer and Ms. Mollie

Singer follows:]

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Mr. WELDON. Thank you, girls.

We will now hear from Dr. Carl Hook. You are recognized for 5

minutes, Doctor.

Dr. HOOK. Thank you, Mr. Chairman. I’d like to start my comments by first stating that I’m speaking as a private citizen and

not as a formal representative of the Mayo Foundation.

Mr. Chairman and members of the subcommittee, thank you very

much for this opportunity to participate in this hearing today concerning one of the most important issues facing this government

and country today. The issue of embryonic stem cell research places

before us critical choices that will determine the nature and soul

of our Republic for years to come.

There are four questions before us, and they are these: No. 1, as

a society, are we willing to devalue and commodify members of our

human family?

No. 2, are we willing to violate principles of human subjects research that have arisen from the ashes of atrocities committed here

and abroad under circumstances when other members of the

human community have been devalued and commodified for utilitarian logic, precisely as is occurring now in the stem cell debate?

No. 3, are we willing to transform our concept of proxy informed

consent for medical care into a license to kill by allowing genetic

parents to effectively abandon the offspring they deliberately conceived to fatal medical experimentation under a pretense of informed consent.

No. 4, are we willing to set the precedent that the promise, not

proof, of future medical treatments for third party patients is sufficient to endorse the destruction of living human beings now?

Human subject research none of us would argue is an evil thing.

It has provided many wonderful treatments to patients over the

past 200 years. However, the history of human research is checkered with horrible abuses, including in our own country the

Tuskegee syphilis trials, the Willowbrook hepatitis experiments,

and across the ocean during the Second World War experiments

performed at Dachau.

During the Nuremberg war crime trials, conducted at the conclusion of World War II, the German researchers tried for their crimes

defended themselves by forwarding this argument: First, there allegedly existed a great need for research in order to save the lives

of soldiers and sailors. Two, the subjects of the experiments were

already targeted to die. Someone else had made the decision that

they were to die; we didn’t. And, therefore, three, we should not let

this valuable commodity, this chance to learn in ways we otherwise

could not, go to waste.

This argument, resoundingly rejected by the Nuremberg tribunal, is precisely the same argument that is being put forward today

to justify using government funds and authorizations for research

on human embryos. The only difference is that we have substituted

human embryos as the group of devalued, commodified human

beings who are to be sacrificed on the altar of scientific progress.

One of the products of the Nuremberg trials was the Nuremberg

Code of Research Ethics, created with the hope that the mistakes

in Germany would never be repeated by the research community

again. The document has served as the foundation of all subseVerDate 11-MAY-2000 11:24 Mar 26, 2002 Jkt 000000 PO 00000 Frm 00183 Fmt 6633 Sfmt 6633 C:\DOCS\77248.TXT HGOVREF1 PsN: HGOVREF1
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quent statements governing human subjects research. Section 5 of

that document reads, ‘‘No experiment should be conducted when

there is an a priori’’—that is, a prospective—‘‘reason to believe that

death or disabling injury will occur, except perhaps in those experiments where the experimental physicians are to serve as subjects.’’ It is ironic, indeed, that as that great generation which protected

us from expansion of such reductionistic, utilitarian dehumanization of our fellow human beings and bequeathed to us the wisdom

and legacy of the Nuremberg Code, as that generation is passing

away, we are abandoning the principles for which it fought and the

lessons it painfully learned.

A subsequent international document governing human subject

research is the Declaration of Helsinki of the World Medical Association. Under the section on basic principles it states, ‘‘Concern for

the interests of the subject must always prevail over the interests

of science and society.’’ Later, addressing non-therapeutic biomedical research, the statement reads, ‘‘In the purely scientific application of medical research

carried out on a human being, it is the duty of the doctor to remain

the protector of the life and health of that person on whom biomedical research is being carried out.’’ There is no question that embryonic stem cell research is nontherapeutic research when the small human being is dissected to

its death. It comes down to this fundamental question: Is the

human embryo a human being whose research protocols ought to

be governed by these rules? Yes, she is. She is a human being who

is in an early phase of her maturation. She is a human being at

a developmental stage that you and I once inhabited. She is not

some other species. She is not just tissue. Tissue cannot continue

to develop into a full adult human being unless acted upon by extreme laboratory manipulations, which are as yet still uncertain in

feasibility.

Dehumanization of the embryo is a form of ageism, or age-based

discrimination. All of the attempts to use some developmental milestone beyond fertilization as the magical point at which a human

being is finally recognized as being human have been arbitrary,

subjective, and have been proposed by those who want to do something to or with the individual in question.

I am concerned that we have heard expression of this logic from

the distinguished Senator in his testimony earlier today, but, even

worse than trying to use a developmental milestone, we have reduced our definition of humanity to geography rather than biology.

This fact that our arbitrary definitions of humanity have been

proposed usually to justify doing something to others should disqualify them, and we should not use such self-serving arguments

to define away each genetically unique human being’s humanity.

Once a genetically unique individual exists at fertilization, she is

human. She is a being. She is a human being, and she is covered

by the rules of human subjects research.

Even if one wishes to say that as a society we are not sure about

the nature of the human embryo, the so-called agnostic stance,

then we are still compelled to provide the same protections as

apply to other human beings because there is still the significant

possibility that the embryo is a human being. To choose otherwise

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is to say we don’t have to be sure we’re not destroying human

beings, and therefore, it is permissible to destroy humans for utilitarian purposes.

I make one final point. Recently, there were hearings here in

Washington that revealed that in other countries individuals condemned by the death penalty have been having their organs harvested at the time of their death or were killed in the process of

having their organs harvested, and this was decried, as all civilized

nations would do. And yet the perpetrators of these crimes against

humanity were only employing the exact same ‘‘stewardship logic’’ as the proponents of destructive embryonic stem cell research. How

can we, with any sense of good faith, decry such opportunism based

upon the demeaning and commodification of our fellow human

beings, turn around and target another group of human beings,

human embryos, for the exact same type of behavior?

We dehumanize the immature members of our human family at

great risk. If we can define away others’ humanity, then in the end

none of us is truly protected by our supposed codes of protection.

That sort of thing may take place elsewhere, but it should never

happen in the United States of America.

Thank you.

[The prepared statement of Dr. Hook follows:]

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Mr. WELDON. Thank you, Doctor.

The Chair will now recognize himself for 5 minutes for questioning.

Ms. Samuelson, I want to thank you for your testimony. It was

very compelling. Not only did I take care of many Parkinson’s patients when I practiced medicine, but I had an uncle I was very

close to who ultimately did die of the disease. Certainly I salute

you and all Parkinson’s sufferers who deal with this on a daily

basis.

You testified before the Commerce Committee about a year ago

in support of fetal research to develop possible treatments for Parkinson’s disease. As I am sure you are probably aware, the research that you were advocating for at that time, about a little over

a year ago, had to be cut short because of some pretty severe adverse clinical outcomes. Some of the patients had uncontrollable

tremors, and the research protocol was ended.

In your study of this issue, I assume you look at the research.

Have you seen any research studies to suggest that these stem cell

research protocols, specifically embryonic stem cell protocols, hold

any particular promise, and, in particular, over the use of adult

stem cells or other treatment modalities that are out there?

Ms. SAMUELSON. Thank you. Obviously, I’m not a scientist. I care

about it deeply and I study it as best I can as a layperson. So——

Mr. WELDON. Well, I am going to ask the two people sitting to

your right to respond to my questions because I expect them to be

able to handle it better. I wanted to give you the first crack at the

question.

Ms. SAMUELSON. Well, I appreciate that.

Mr. WELDON. Parkinson’s is a common disease. It is one of the

more frequent diseases that are cited by people to argue in favor

of embryonic stem cell research. I just haven’t seen a good study

to suggest that it has any potential application, and I was wondering if you have anything you want to share with the committee.

Ms. SAMUELSON. Sure. Sure, there are two thoughts. I spend a

lot of time talking to the scientists to understand it as well as I

can and to separate out hope from reality. Because, of course, we

feed ourselves on hope because sometimes that’s the only thing we

have to go on.

But one of the two letters that are attached to my testimony is

from Dr. Ole Isacson, who is the director of the Morris K. Udall

Center for Research at Harvard. Let me just briefly read a couple

of sentences.

He says, ‘‘We have obtained dopaminergic neurons,’’ which you

know are the brain cells that are slowly degenerating in Parkinson’s. ‘‘We have obtained dopaminergic neurons of the same kind

that die in Parkinson’s disease through the use of embryonic mouse

stem cells. Such cells have not yet been obtained by use of adult

stem cells. The cells that were obtained from embryonic stem cells

were transplanted to mouse and rat brains where they reconnected

the circuitry typically damaged in Parkinson’s disease. These cells

were also shown to be functional and were able to carry out the

functions that normally are handled by the dopamine cells that die

in Parkinson’s disease.’’

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He would dearly love to take that research and carry it forward

into human clinical trials.

Mr. WELDON. Did he publish that research that he’s citing to you

in the letter format?

Ms. SAMUELSON. I don’t know. I don’t know, and I commend you

to talk to him and we can certainly put him in touch with you. I

think he would probably welcome the chance to come here and

speak about his research.

Mr. WELDON. I want to give Dr. Prentice an opportunity to respond to this—— Ms. SAMUELSON. OK.

Mr. WELDON [continuing]. In the time I have left, I’ve only got

about a minute left—or Dr. Fischbach.

Dr. PRENTICE. Thank you, Mr. Chairman. I believe I have seen

a reference for the study in which Dr. Ole Isacson in the culture

dish was able to achieve the transformation of the embryonic stem

cells into the dopaminergic cells. I don’t believe this study has been

published in terms of transplant into animal models with Parkinson’s, although Dr. Fischbach might have that information.

And that is correct that in the culture dish the adult stem cells

have not been transformed, at this point at least, into dopaminergic

neurons. There is a published study using adult stem cells, adult

brain stem cells, in which the cells were not removed from the animal, which was a model of Parkinson’s, but instead a growth factor

was given directly into the brains of the animals of this Parkinson’s

model, and they did achieve some therapeutic benefit. So the indications are that this could possibly be done as well in terms of patients, although, obviously, we still need to do the animal model

studies to see whether this would work.

Dr. FISCHBACH. Can I comment on that study? The study you referred to is an interesting one, funded by the Neurology Institute.

Although it did show modest improvement in one measurement of

movement, reducing the rigidity, not the tremor or the axial signs,

it did exhibit terrible side effects in 15 percent of the patients.

Mr. WELDON. You are talking about the New England Journal

study, correct?

Dr. FISCHBACH. Yes. I wrote an editorial that accompanied that

study. To my mind, as I said in that editorial, this was the perfect

example of the need for stem cell research; that what was transplanted in that study were whole clumps of tissue, that they were

not purified cells; that they were regions of the brain, the mesencephalon from embryos implanted in the tissue. It took four embryos per patient, that with the advent of stem cell lines which

might grow up to billions of cells from one, and the purity of the

stem cell lines and the ability to control the cells much better than

you could with a mixed heterogeneous bit of tissue, that this was

a real call for research on stem cells.

Now the difficulty with that study is the difficulty with all clinical research: Gains are hard-won and adverse side effects occur.

We must learn from them and promote additional research.

I don’t think the Ole Isacson study is yet published, but an earlier one by Ronald McKhie of the NIH is, using rat embryonic stem

cells to restore dopamine-containing neurons in the mid-brain of

mice who were made a very good model of Parkinson’s disease. It

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restored the neurons. It restored the dopamine, and it reversed the

abnormal movements. And this was with embryonic rat stem cells.

I think you’re quite right that we’re not there yet in human trials

with human embryonic stem cells, but we are at the stage where

all of the animal research has pointed to this as the very next step.

So I think that’s the region we’re poised at. There’s good animal

experimentation in the areas I know about in cases of stroke, multiple sclerosis, spinal cord injury, Parkinson’s disease, and Alzheimer’s disease, leading to, pointing to the next step of clinical

trials in humans.

Mr. WELDON. My time has expired. I would love to get into this

in more detail. I need to now recognize Ms. Davis, a member of the

subcommittee.

Mrs. JO ANN DAVIS OF VIRGINIA. Mr. Chairman, I am going to

yield to Congressman Smith if you can come back to me.

Mr. WELDON. Without objection.

Mr. SMITH OF NEW JERSEY. Thank you very much, Ms. Davis,

and thank you, Mr. Chairman, for yielding. I just have a couple of

questions I would like to ask our distinguished panel, and thank

them for their testimony today.

Dr. Hook, in his statement—and this is to you, Dr. Fischbach— says, ‘‘One of the products of the Nuremberg tribunals was the

Nuremberg Code of Research Ethics. The code was created with the

hope that the research community would not repeat the mistakes

in Germany. Indeed, it is interesting that Germany, the country

with the most horrific experience with fatal human subject experimentation, today bars the destruction of living human embryos for

research purposes.’’ Would you support a law that barred the creation of human embryos for research purposes?

Dr. FISCHBACH. I would support that law. I think that is a step

beyond what is necessary now. Although that has scientific, as

mentioned before, advantages, I would support that law.

Mr. SMITH OF NEW JERSEY. You would support banning the creation of human embryos for research, just so I am clear?

Dr. FISCHBACH. Specifically for research, yes.

Mr. SMITH OF NEW JERSEY. Would the other panelists want to

respond to that as well?

Dr. PRENTICE. I would definitely support the banning of creation

of human embryos for research.

Ms. SAMUELSON. I’m offended at it, by it. I have been careful at

every step to study both sides of the issues because I am a moral

and ethical person as well as a desperate patient. I think it’s important that we do that, and it’s not the choice that’s before us

right now.

Mr. SMITH OF NEW JERSEY. But my question is, because it has

been suggested that somehow if the President were to OK the funding of embryonic stem cell research, that may have a chilling effect

on private research on embryos, but there is a larger question here

as to whether or not it ought to be legal. We are talking today primarily about funding, but the very issues that are raised at this

hearing go far beyond that. That’s why the question.

Ms. SAMUELSON. And that’s why we need Federal regulations in

this arena.

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Mr. SMITH OF NEW JERSEY. So you would not support it, just to

be clear? Or you would support it? I mean it’s very clear-cut. Some

countries ban it, like Germany—— Ms. SAMUELSON. I’m not a theologian or a scientist. I know this

particular field and have studied it carefully to make a moral, ethical decision about that, and that’s the choice that’s before us right

now.

Mr. SMITH OF NEW JERSEY. But, as lawmakers, we are faced

with what could be an explosion of human experimentation that

may or may not be covered by our current statute. So if it is found

to be infirm and does not reach to a Jones Clinic, for example, that

may require, or at least an attempt, to try to legislate on the issue,

and that’s why the question.

Ms. SAMUELSON. And Federal funding shouldn’t be used for that.

It should have the same rigorous scientific and ethical scrutiny

that stem cells have had, that this use of existing embryonic stem

cell research has had.

Mr. SMITH OF NEW JERSEY. So you would be, in terms of—you

would say that, whether there is Federal funding or not, the NIH

guidelines should apply, so you would not be for banning it? Just

so we’re clear. I am just trying to elicit an honest response.

Ms. SAMUELSON. You’re asking me to give you an answer about

something I haven’t studied, and the easy thing to do would be to

do that. I have not done this in this work, and I just don’t feel I

can.

Mr. SMITH OF NEW JERSEY. Any of the other panelists?

Dr. HOOK. Clearly, it should be forbidden, not just not funded,

but completely outlawed.

Mr. SMITH OF NEW JERSEY. I appreciate that. Thank you.

Let me just ask perhaps, Dr. Prentice, if you would respond to

this and, Dr. Fischbach, if you would like as well: Have adult stem

cells or embryonic stem cells been more successful in clinical trials

and which has shown greater success in treating diabetes, adult

stem cells or embryonic stem cells?

Dr. PRENTICE. Well, Congressman, in terms of clinical trials,

there have been no clinical trials with embryonic stem cells. There

are currently no reports of embryonic stem cells being used whatsoever in patients, whereas there are numerous reports of adult stem

cells or cord blood stem cells successfully being used. We have Nathan sitting here because of the success of adult and cord blood

stem cells, and the cells are being used, the adult stem cells, successfully for numerous treatments in terms of cancer therapies

along with chemotherapy or radiation, in terms of treatments for

multiple sclerosis and lupus and a number of other conditions, even

to grow new corneas to restore sight to legally blind patients and

the first report recently of using a patient’s own adult muscle stem

cells to take care of damage due to a heart attack.

Mr. WELDON. The gentleman’s time has expired. The Chair now

recognizes Ms. Schakowsky, a member of the subcommittee, for 5

minutes.

Ms. SCHAKOWSKY. Thank you, Mr. Chairman. First of all, Mr.

Hook, I want to tell you that comparing the Nuremberg laws to

stem cell research is offensive to me as a Jew, and I feel that you

are denigrating the annihilation and the planned murder of 6 milVerDate 11-MAY-2000 11:24 Mar 26, 2002 Jkt 000000 PO 00000 Frm 00193 Fmt 6633 Sfmt 6633 C:\DOCS\77248.TXT HGOVREF1 PsN: HGOVREF1
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lion living, breathing individuals by comparing that to the combination of a sperm and an egg in a test tube, and I just want to

state that very clearly for the record, and I have a question for you.

Would it be your position, then, as someone who believes that

discarding embryos is murder, that a couple who may offer those

embryos should be forced to put all 23, for example, remaining genetically similar embryos up for adoption?

Dr. HOOK. First, I’d like to say no offense was intended, Ma’am.

I was referring not to the entire Holocaust, but to the experimentation which was what the Nuremberg doctors’ trials were in part

about. I would submit back to you that the logic is, indeed, identical, and that’s very disturbing.

Ms. SCHAKOWSKY. No, I want to disagree with that because then

you are saying that my support of stem cell research is equivalent

to the logic that led to the annihilation of the Jews and others, and

I reject that wholeheartedly, emphatically.

Dr. HOOK. Your logic is the utilitarian argument that was used

to do inhumane destructive research—— Ms. SCHAKOWSKY. Well, let’s follow this question then. Are you

saying, then, that those 23 remaining embryos, that they should be

forced to be put up for adoption? And, further, should they be frozen forever, for example, against the wishes of the couple? Because

then carrying your logic to its extreme, that is what would happen.

Dr. HOOK. Well, we do have laws that prohibit abandonment of

other children, and we do have laws that prohibit the abuse of

other children. Proxies who use their proxy authority to make a decision leading to the death of the child they conceived certainly

could be considered abusive. I think this is a very large question

that we as a society must confront, and this stem cell debate has

brought to the focus not only issues of stem cell research, but it has

brought up questions about the entire assisted reproductive process

that we use.

Ms. SCHAKOWSKY. So it is well known in this process that many

embryos don’t survive. This is known from the start, the dethawing

and implantation process. So if, as you believe, an embryo is morally equivalent to a human being, then is it not immoral to dethaw

and implant, even for the purposes of adoption, knowing that many

of these will not survive?

Dr. HOOK. That is problematic, yes. There are those who would

advocate that IVF may be done with fresh cycles, limiting the number of conceived embryos, and not cryo-preserving them. Others assume or accept that the loss in the cryo-preservation process is

akin to the loss that may occur naturally. Certainly, the intent is

not there for the destruction of the embryo. That is morally different than our making choices that specifically destroy the embryo

rather than taking a chance.

Ms. SCHAKOWSKY. I would think that the parents of this diabetic

child who testified so eloquently would disagree with that.

Let me ask you, Dr. Fischbach, a question that was asked also

to Dr. Hook—no, not Dr. Hook. Anyway, the question being the

issue of adult stem cell research, and if you could compare for us

the efficacy of stem cell and embryonic stem cells?

Dr. FISCHBACH. Let me say at the beginning—and then I’ll tell

you why, but in the beginning I want to say that I disagree with

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my colleague in that I know of no adult stem cell which has been

used to treat a central nervous system disorder in a human, and

I don’t know that in either published or unpublished records.

And I want to be clear that I am very much in favor of adult

stem cell research because I think the promise here is great, but

we should be absolutely precise about the definition of the word

‘‘stem cell.’’ There are mixtures of cells which contain a few cells

that can take on the identity of a missing cell, but to truly be a

stem cell and truly to be useful for therapy, this cell must be purified, isolated, and it must be able to proliferate. We must understand whether these cells not only are effective, but whether they

are safe. For that reason, I don’t know of any adult stem cell that

has been identified, purified, and grown up to large quantities to

the point where we can do safety studies, where the FDA would

treat this as a new medicine. Embryonic stem cells have that promise, and that’s already happened.

Ms. SCHAKOWSKY. Thank you. Thank you, Mr. Chairman.

Mr. WELDON. The gentlelady’s time has expired. The Chair now

recognizes the gentleman from California, Mr. Waxman.

Mr. WAXMAN. Thank you very much, Mr. Chairman. I would

thank the panel. I am sorry I wasn’t here for all of your presentation, but I got a report on what you all had to say.

Dr. Fischbach, you are the former Director of NIH’s Institute for

Neurological Disorders and Stroke and the current dean of the

school of medicine at Columbia University. In your opinion, why is

it so essential for medical progress for scientists to be able to do

research with embryonic stem cells?

Dr. FISCHBACH. Because I think the embryonic cell, by most criteria, is not identical to the adult stem cell. In fact, everything that

we’ve seen in animal embryonic cells indicates that they have a

greater diversity of offspring, and this is going to be essential in

complex tissues, where these cells must respond to a myriad of signals, and also that they have the ability to proliferate essentially

eternally, so that they can produce a line of cells which will be the

same this year and next year and the year after, where one can

test the safety as well as the efficacy of this cell. It will be easier

to characterize.

Now it may well be that we will learn more in short order about

adult stem cells, but I don’t think we can predict breakthroughs or

when they will occur. So I think that research ought to go on in

both areas, but I would be strongly opposed to seeing research stop

in one area that is so promising.

Mr. WAXMAN. If research were allowed to proceed, when would

you expect that patients would start to see benefits?

Dr. FISCHBACH. To see benefit? Well, the clinical trial mentioned

earlier is an important lesson. I think we have to make this jump

from advanced animal experimentation to human trials, but unless

we are allowed to do research on all sorts of stem cells, we will not

be able to answer that question at all. My own prediction is I think

I’m hoping within the next 5 to 10 years we will see real advances

in trophic factor and stem cell research in humans.

Mr. WAXMAN. A number of my colleagues made the point, so if

the government funds aren’t used for this kind of research, the private sector would step in to provide adequate funding, and the reVerDate 11-MAY-2000 11:24 Mar 26, 2002 Jkt 000000 PO 00000 Frm 00195 Fmt 6633 Sfmt 6633 C:\DOCS\77248.TXT HGOVREF1 PsN: HGOVREF1
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search benefits would still be there, but we wouldn’t use taxpayers’ dollars, especially the taxpayers who are offended by this research.

How do you respond to that?

Dr. FISCHBACH. Well, my worry, Congressman Waxman, is that

research behind closed doors is behind closed doors and that we

will not have the scrutiny of peer review and public criticism of

that research. Indeed, even today, with two or three companies conducting stem cell research, there are worries about accessibility to

these stem cell lines because of patent infringements. They are just

not going to be available as if these were open to the public. And

I think that the quality of the research, if I can be chauvinistic,

will not be as great as if publicly supported scientists are involved.

Mr. WAXMAN. What would be the situation at universities? How

difficult would it be for them to accept private funding for this research, if we had a Federal ban on funding research?

Dr. FISCHBACH. I’m sorry, how would—— Mr. WAXMAN. How difficult would it be for universities to accept

private funds if there is a Federal ban?

Dr. FISCHBACH. Well, I think there are many, many individuals

who feel passionately about this who would contribute, but the

rules and regulations would make it difficult because people would

essentially have to run two types of laboratories, where they had

their government-funded research and their private research.

Mr. WAXMAN. And let me ask Mollie Singer a question, if I could,

and maybe pull the mic over. How old were you when you were diagnosed with diabetes?

Ms. MOLLIE SINGER. I was 41⁄2 years old.

Mr. WAXMAN. And can you tell us about your daily routine,

checking your blood sugar levels and giving yourself insulin, and

the like?

Ms. MOLLIE SINGER. Well, I test my blood sugar 10 to 16 times

a day, and this is an insulin pump, and I bolus instead of taking

shots and it has insulin right here. It’s connected to me, so that delivers insulin.

Mr. WAXMAN. What would a cure mean for you? It would mean

you wouldn’t have to do all those things anymore, huh?

Ms. MOLLIE SINGER. I wouldn’t have tests. I wouldn’t have to

take shots or have an insulin pump. I could just be a normal kid

and have sleepovers and just have a real life.

Mr. WAXMAN. Thank you very much for being here.

Mr. WELDON. The gentleman’s time has expired. The Chair now

recognizes the gentlelady from New York, Mrs. Maloney.

Mrs. MALONEY. Thank you. I particularly want to thank the

Singer young ladies and Nathan for being here because they are

really here on their spring vacation, their holiday—or summer vacation.

I would like to ask you, how is your life different from your sister, the fact you don’t have juvenile diabetes?

Ms. JACKIE SINGER. Well, I don’t have to test and I don’t have

to wear an insulin pump. Even though I’m her sister and I don’t

have diabetes, it still affects me greatly. I think that if this disease

is cured, it would really mean a lot to both of us and all of our family.

Mrs. MALONEY. Thank you so much.

189

Joan Samuelson, how many people have Parkinson’s and what

are the cures that are available now?

Ms. SAMUELSON. It’s around a million Americans. At the moment, in the sense of an effective therapy that will last for a person’s normal lifespan, there is no cure. The scientists say there

could be. But really the options now are essentially the medicine

L-dopa that I talked about in my testimony, which eventually just

doesn’t work, and a couple of surgical options, something called

deep brain stimulation that sometimes works for a while but isn’t

really regarded as something that’s repairing the system and it

continues to deteriorate.

Mrs. MALONEY. As a woman with Parkinson’s, what do you fear

the most about your illness?

Ms. SAMUELSON. Losing the things that Milly has lost: my independence, my freedom, my dignity. I so admire her courage, and I

guess God gives you what you need when you need it, and my suffering is daily, but it’s nothing like what she goes through every

day, having someone else feed her and dress her, and so on. Mort’s

book talks at length about that. I fear—I’m beginning to fear death

as well because I’m starting to think that the cure won’t be in time.

Mrs. MALONEY. Do you believe that Federal funding will improve

or reduce oversight and accountability of research using embryonic

stem cells?

Ms. SAMUELSON. Well, I guess there’s no question that it would

increase it. It’s so the engine that drives biomedical breakthroughs,

and so there’s this vacuum right now where it’s just not going on

in a concerted, careful way, and it should be.

Mrs. MALONEY. Mr. Chairman, I would like permission to place

in the record a memo from Harriet Rabb to the former Director of

NIH which states that the current NIH guidelines are legal and

gives a legal explanation.

Mr. WELDON. Without objection.

Mrs. MALONEY. I would also like to place in the record the National Bioethics Advisory Commission’s Executive Summary.

Mr. WELDON. Without objection.

Mrs. MALONEY. Dr. Fischbach, would you give us a sense of the

review process used by the NIH that led to the establishment of

the stem cell guidelines that were issued in August 2000, and was

it comprehensive? Can you give us an oversight?

Dr. FISCHBACH. Well, this was a long and I think very thorough

process. It occupied more than a year of time. A working group was

formed by the then-Director of the National Institutes of Health,

Harold Varmus, that consisted of scientists, patients, patient advocates, lawyers, ethicists, and other members of the public. They

worked for a year and drafted guidelines, and they were advised

and criticized constructively by the National Bioethics Commission.

They published their results in the Federal Registry, received numerous inputs, modified the guidelines, and then finally published

them. So I think it was an extremely thorough, unusually thorough, series of deliberations and got very wide airing among the

scientists and advocate and legal community.

Mrs. MALONEY. Do you support the guidelines?

Dr. FISCHBACH. I do support the guidelines.

190

Mrs. MALONEY. And are you familiar with the recommendations

regarding stem cell research by the National Bioethics Advisory

Commission which was established by the prior President? Was it

fair? Was it balanced? Do you support their recommendations?

Could you give us an oversight?

Dr. FISCHBACH. Well, the NBAC, as it’s called, was established

by the President, and they in many ways went beyond—or the

guidelines are more conservative than the NBAC recommendations.

So I don’t want to—I want to stay with the NIH guidelines, which

I believe in a real sense are a compromise between what NBAC

recommended and no stem cell research, human embryonic stem

cell research at all.

Mr. WELDON. The gentlelady’s time has expired. The Chair now

recognizes the gentlelady from Virginia, Ms. Davis.

Mrs. JO ANN DAVIS OF VIRGINIA. Thank you, Mr. Chairman.

Ms. Samuelson, you said a little bit ago that you fully supported

Federal regulations?

Dr. FISCHBACH. I’m sorry, is that—— Mrs. JO ANN DAVIS OF VIRGINIA. No, Ms. Samuelson. I guess I

am going to go back to Congressman Smith’s comment because I

am not sure I understood your answer. Would you support a ban

on embryos that were created just for the purpose of research?

Ms. SAMUELSON. I don’t think Federal funding should be supporting that research now, if that’s your question.

Mrs. MALONEY. Will the gentlelady yield for a clarification—— Mrs. JO ANN DAVIS OF VIRGINIA. Not at the moment.

Mrs. MALONEY [continuing]. Of information?

Mrs. JO ANN DAVIS OF VIRGINIA. Not at the moment. After I

have finished, I will.

Mrs. MALONEY. OK.

Ms. SAMUELSON. There’s no ban in the same sense as the ban on

Federal funding, a de facto ban now, on embryonic stem cell—— Mrs. JO ANN DAVIS OF VIRGINIA. No, I mean, would you support

a Federal regulation that says embryos cannot be created strictly

for the purpose of research?

Ms. SAMUELSON. I think I would if I studied it. Maybe it’s my

legal training. I haven’t studied that one. As I said to Mr. Smith,

it offended me when I read about it.

Mrs. JO ANN DAVIS OF VIRGINIA. Right. Well, we have that company in Virginia down not too far from where I am from. That is

why I am asking the question.

Ms. SAMUELSON. I don’t understand—as I understand it, it’s not

necessary, and I do find it personally offensive.

Mrs. JO ANN DAVIS OF VIRGINIA. Let me followup on that. It has

been suggested that only embryos from fertility clinics would be destroyed for research. Yet, the biotech industry testified before Congress just last month that embryo cloning would be necessary to

prevent transplant rejection. Do any of you here support research

that involves the cloning of the human embryos?

Dr. FISCHBACH. I think that’s a hypothesis. That’s getting back

to the immune rejection theory. The notion is that, if you make

your own stem cell line from your own nucleus and your own egg,

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lieve that embryonic stem cells derived from other embryos will be

less immunogenic with time as they’re carried in culture. So I’ve

heard that argument, but I don’t think that’s a decisive argument

for cloning for research.

Mrs. JO ANN DAVIS OF VIRGINIA. Let me just state, Ms. Samuelson, you know, for us to put ourselves in your shoes, well, certainly

I don’t have Parkinson’s and don’t have cancer and diabetes, but

I will tell you that my husband’s father had Parkinson’s, my very

best, dearest friend who is my husband’s sister has diabetes, just

went through kidney transplant. So this is a hard issue for me because I want the research; I support the research, especially a cure

for diabetes. I just cannot support taking human embryos to do

that. But I will tell you I give my support wholeheartedly to the

research for adult stem cell research and any other cure, but I can’t

justify the taking of what I perceive to be one life to save another

life.

Thank you, Mr. Chairman.

Ms. SAMUELSON. I just wish we could do it all and aggressively.

The column yesterday by William Safire, I didn’t—I would have attached it to my testimony, if I had the time. These are complicated

issues, and I thought it was a real thoughtful analysis of a whole

series of issues. So I commend that to the committee.

Mr. WELDON. Well, we can add that to the record.

Ms. SAMUELSON. Thank you.

Mr. WELDON. We’ve got unanimous consent.

And I would also like to add to the record, under unanimous consent, the legal memorandum on the illegality of the Federal funding on embryo stem cell research by Samuel Casey, along with his

comments to NIH.

I want to thank all of our witnesses——

Mrs. MALONEY. Mr. Chairman?

Mr. WELDON [continuing]. For your testimony. The gentlelady

from New York is recognized.

Mrs. MALONEY. Just as a point of information and clarification,

a number of questions have been asked about the support for the

creation of embryos for the removal of stem cells, and I would like

to clarify that current NIH guidelines would not allow Federal

funding for the creation of embryos for that purpose. So that is

clearly the law now.

Mr. WELDON. I thank the gentlelady for her comments.

Mrs. MALONEY. Thank you.

Mr. WELDON. And I want to thank, again, all of the witnesses,

particularly our two young ladies who did a very excellent job of

appearing before the committee——

Mrs. MALONEY. And Nathan. Don’t forget the young man.

Mr. WELDON [continuing]. And Nathan. You were all, all the

young people were excellent. Additionally, I want to thank our physician and doctor witnesses.

The meeting is now adjourned.

[Whereupon, at 4:55 p.m., the subcommittee was adjourned, to

reconvene at the call of the Chair.]

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