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[House Hearing, 107 Congress]
[From the U.S. Government Publishing Office]

 
          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

                                 ______

                    U.S. GOVERNMENT PRINTING OFFICE
77-248 PDF                  WASHINGTON : 2002

For Sale by the Superintendent of Documents, U.S. Government Printing Office
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                     COMMITTEE ON GOVERNMENT REFORM

                     DAN BURTON, Indiana, Chairman
BENJAMIN A. GILMAN, New York         HENRY A. WAXMAN, California
CONSTANCE A. MORELLA, Maryland       TOM LANTOS, California
CHRISTOPHER SHAYS, Connecticut       MAJOR R. OWENS, New York
ILEANA ROS-LEHTINEN, Florida         EDOLPHUS TOWNS, New York
JOHN M. McHUGH, New York             PAUL E. KANJORSKI, Pennsylvania
STEPHEN HORN, California             PATSY T. MINK, Hawaii
JOHN L. MICA, Florida                CAROLYN B. MALONEY, New York
THOMAS M. DAVIS, Virginia            ELEANOR HOLMES NORTON, Washington, 
MARK E. SOUDER, Indiana                  DC
JOE SCARBOROUGH, Florida             ELIJAH E. CUMMINGS, Maryland
STEVEN C. LaTOURETTE, Ohio           DENNIS J. KUCINICH, Ohio
BOB BARR, Georgia                    ROD R. BLAGOJEVICH, Illinois
DAN MILLER, Florida                  DANNY K. DAVIS, Illinois
DOUG OSE, California                 JOHN F. TIERNEY, Massachusetts
RON LEWIS, Kentucky                  JIM TURNER, Texas
JO ANN DAVIS, Virginia               THOMAS H. ALLEN, Maine
TODD RUSSELL PLATTS, Pennsylvania    JANICE D. SCHAKOWSKY, Illinois
DAVE WELDON, Florida                 WM. LACY CLAY, Missouri
CHRIS CANNON, Utah                   DIANE E. WATSON,California
ADAM H. PUTNAM, Florida              ------ ------
C.L. ``BUTCH'' OTTER, Idaho                      ------
EDWARD L. SCHROCK, Virginia          BERNARD SANDERS, Vermont 
JOHN J. DUNCAN, Tennessee                (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         ELIJAH E. CUMMINGS, Maryland
ILEANA ROS-LEHTINEN, Florida         ROD R. BLAGOJEVICH, Illinois
JOHN L. MICA, Florida,               BERNARD SANDERS, Vermont
BOB BARR, Georgia                    DANNY K. DAVIS, Illinois
DAN MILLER, Florida                  JIM TURNER, Texas
DOUG OSE, California                 THOMAS H. ALLEN, Maine
JO ANN DAVIS, Virginia               ------ ------
DAVE WELDON, Florida

                               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

                            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

          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 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.
    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:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]

    
    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 researchers 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:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]

    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.
    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, 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:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]

    
    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 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 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 political 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 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, 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 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.
    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 provided 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?

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.
    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 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 1\1/2\ 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.
    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 traditional 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.
    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--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.
    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?
    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 2\1/2\, 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.
    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 $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 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 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.
    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.
    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, set up 
fundraisers and establish programs to develop money specific 
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 multiple 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.]
    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 
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-day-old 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.
    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:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]

    
    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 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.
    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.
    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 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 subsequent 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 
non-therapeutic 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 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.''
    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 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.
    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 million 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 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 research 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 4\1/2\ 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.
    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.
    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, that it will not be subject to these immunological 
constraints because it's identical with yourself. I think 
there's good reason to believe 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.]
    [Additional information submitted for the hearing record 
follows:]

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