[Senate Hearing 108-967]
[From the U.S. Government Publishing Office]



                                                        S. Hrg. 108-967

 
    PRENATAL GENETIC TESTING TECHNOLOGY: SCIENCE, POLICY, AND ETHICS

=======================================================================

                                HEARING

                               before the

                 SUBCOMMITTEE ON SCIENCE, TECHNOLOGY, 
                               AND SPACE

                                 of the

                         COMMITTEE ON COMMERCE,
                      SCIENCE, AND TRANSPORTATION
                          UNITED STATES SENATE

                      ONE HUNDRED EIGHTH CONGRESS

                             FIRST SESSION

                               __________

                           NOVEMBER 17, 2004

                               __________

    Printed for the use of the Committee on Commerce, Science, and 
                             Transportation



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       SENATE COMMITTEE ON COMMERCE, SCIENCE, AND TRANSPORTATION

                      ONE HUNDRED EIGHTH CONGRESS

                             FIRST SESSION

                     JOHN McCAIN, Arizona, Chairman
TED STEVENS, Alaska                  ERNEST F. HOLLINGS, South 
CONRAD BURNS, Montana                    Carolina, Ranking
TRENT LOTT, Mississippi              DANIEL K. INOUYE, Hawaii
KAY BAILEY HUTCHISON, Texas          JOHN D. ROCKEFELLER IV, West 
OLYMPIA J. SNOWE, Maine                  Virginia
SAM BROWNBACK, Kansas                JOHN F. KERRY, Massachusetts
GORDON H. SMITH, Oregon              JOHN B. BREAUX, Louisiana
PETER G. FITZGERALD, Illinois        BYRON L. DORGAN, North Dakota
JOHN ENSIGN, Nevada                  RON WYDEN, Oregon
GEORGE ALLEN, Virginia               BARBARA BOXER, California
JOHN E. SUNUNU, New Hampshire        BILL NELSON, Florida
                                     MARIA CANTWELL, Washington
                                     FRANK R. LAUTENBERG, New Jersey
      Jeanne Bumpus, Republican Staff Director and General Counsel
   Samuel E. Whitehorn, Acting Democratic Staff Director and General 
                                Counsel
                                 ------                                

             SUBCOMMITTEE ON SCIENCE, TECHNOLOGY, AND SPACE

                    SAM BROWNBACK, Kansas, Chairman
TED STEVENS, Alaska                  JOHN B. BREAUX, Louisiana, Ranking
CONRAD BURNS, Montana                JOHN D. ROCKEFELLER IV, West 
TRENT LOTT, Mississippi                  Virginia
KAY BAILEY HUTCHISON, Texas          JOHN F. KERRY, Massachusetts
JOHN ENSIGN, Nevada                  BYRON L. DORGAN, North Dakota
GEORGE ALLEN, Virginia               RON WYDEN, Oregon
JOHN E. SUNUNU, New Hampshire        BILL NELSON, Florida
                                     FRANK R. LAUTENBERG, New Jersey


                            C O N T E N T S

                              ----------                              
                                                                   Page
Hearing held on November 17, 2004................................     1
Statement of Senator Brownback...................................     1
Statement of Senator Lautenberg..................................     3

                               Witnesses

Bruchalski, Dr. John, Board Certified Obstetrician and 
  Gynecologist...................................................    11
    Prepared statement...........................................    13
Chicoine, MD, Brian, Medical Director, Adult Down Syndrome 
  Center, Advocate Lutheran General Hospital.....................    15
    Prepared statement...........................................    18
Hudson, Ph.D., Kathy, Director, Genetics and Public Policy 
  Center, Berman Bioethics Institute and Institute of Genetic 
  Medicine, Johns Hopkins University.............................    20
    Prepared statement...........................................    22
Imparato, Andrew J., President and Chief Executive Officer, 
  American Association of People with Disabilities (AAPD)........    27
    Prepared statement...........................................    30
Kimbrell, J.D., Andrew, Executive Director, International Center 
  for Technology Assessment......................................    32
    Prepared statement...........................................    35
Sensenbrenner, Cheryl, Board Member, American Association of 
  People with Disabilities.......................................     5
    Prepared statement...........................................     7

                                Appendix

Lautenberg, Hon. Frank R., U.S. Senator from New Jersey, prepared 
  statement......................................................    47
Written questions submitted by Hon. Frank R. Lautenberg to the 
  witnesses......................................................    48


    PRENATAL GENETIC TESTING TECHNOLOGY: SCIENCE, POLICY, AND ETHICS

                              ----------                              


                      WEDNESDAY, NOVEMBER 17, 2004

                               U.S. Senate,
    Subcommittee on Science, Technology, and Space,
        Committee on Commerce, Science, and Transportation,
                                                    Washington, DC.
    The Subcommittee met, pursuant to notice, at 2:05 p.m. in 
room SR-253, Russell Senate Office Building, Hon. Sam 
Brownback, Chairman of the Subcommittee, presiding.

           OPENING STATEMENT OF HON. SAM BROWNBACK, 
                    U.S. SENATOR FROM KANSAS

    Senator Brownback. I call the hearing to order. Thanks for 
being here with us this afternoon.
    I hope this hearing--I've called you here during the Lame 
Duck portion of our session, and I hope it starts a dialogue on 
an important topic that has, for too long, I think, been 
avoided, ignored, not delved into, and yet has profound impacts 
on our society and actually who we are as a people. And we hope 
to start that here today.
    As Chairman of this Subcommittee, I called this hearing to 
examine the science, policy, and ethics of prenatal genetic 
testing technology and its impact on individuals.
    On our first panel, we'll welcome Mrs. Cheryl 
Sensenbrenner, wife of Congressman Sensenbrenner, who I've had 
the great privilege to work with, and her sister, Tara Rae 
Warren.
    On our second panel, witnesses will discuss the ethics and 
examine the scientific merits of prenatal screening and 
diagnostic testing technologies and their impacts on patients 
and doctors, parents and children.
    And, as I said with this, I hope we start a dialogue, a 
much needed dialogue, on this important subject that I think 
has been swept under the carpet for too long and needs to be 
brought out in the open.
    We have succeeded in mapping the human genome, a masterful 
scientific achievement. And tied to this achievement, we now 
have rapid advancements in technology for genetic screening 
tests able to detect over 450 fatal or debilitating conditions. 
I called this hearing because I am unsatisfied that we are 
doing our best here in the United States to ask the right 
questions in order to safeguard all human life.
    The first ``do no harm'' principle of medical ethics should 
bind the rapid advance of scientific technology and its 
applications to patients. There is no question that this and 
similar topics are reverberating around the globe. Just listen 
to some of the following examples.
    A recently released survey in New Zealand found that 1 out 
of 15 people who took genetic tests for hereditary diseases 
felt coerced into doing so by family members, insurance 
companies, or mortgage lenders.
    In England, all embryos produced for IVF treatments are now 
being screened for cystic fibrosis and Huntington's disease, as 
well as for genetic predisposition to certain types of cancer.
    The Estonian Government's health website proudly claims 
that since a hereditary disease program was instituted in 2003, 
40 babies with Down's Syndrome have been, quote, ``unborn'' and 
the birth of, quote, ``sick babies'' prevented, with the help 
of prenatal diagnostic tests.
    The Netherlands is discussing euthanasia for children up to 
12 years old, targeting disabled children. Research suggests 
that, in the Netherlands, pediatricians make decisions in about 
a hundred cases each year that result in the death of babies 
with severe multiple handicaps.
    And here at home, in the U.S., we seem to be finding that 
women diagnosed with an abnormal baby are coming under pressure 
to terminate their pregnancy. In 2001, the American College of 
Obstetricians and Gynecology recommended tests for cystic 
fibrosis to all Caucasian couples, even though Kaiser 
Permanente reported that among its Northern California 
patients, 95 percent of the couples who were carriers, and 
whose fetuses tested positive, terminated their pregnancies.
    Insurance companies, both public and private, will have to 
make coverage decisions as genetic screening technology 
continues to advance. And such decisions must be made based on 
the ethical impact of the test on the primary patient: the 
unborn.
    While I applaud our passage last year of the Genetic 
Nondiscrimination Act, we must assure that families receive 
full protection from discrimination on the basis of tests on 
the unborn. Health plans that do not normally cover surgical 
abortion may determine that it is cost effective to do so if 
the procedure occurs in concert with the genetic testing 
protocol.
    It is my hope that this hearing will start a dialogue 
around some of these issues before healthcare providers and 
geneticists and possibly insurance companies start making these 
decisions for us.
    As we consider the fast pace of scientific and 
technological progress in our modern world, we must not lose 
our moral compass. It would be devastating to replace our 
``First, do no harm'' principle with a more utilitarian model 
based on collective economic viability. We don't want a world 
where parents feel driven to justify their children's 
existence.
    In addition to the many abilities that persons with 
disabilities have which are equivalent to others, these 
individuals bring a beauty to our world that we don't want to 
miss. We learn compassion, heroism, humility, courage, and 
self-sacrifice from these special individuals. And their gift 
to us is that they inspire us, by their example, to achieve 
these virtues ourselves.
    I look forward to the discussion, and I look forward to the 
panel's presentation on this important topic.
    Senator Lautenberg, do you have an opening statement?

            STATEMENT OF HON. FRANK R. LAUTENBERG, 
                  U.S. SENATOR FROM NEW JERSEY

    Senator Lautenberg. Yes. Thanks very much, Mr. Chairman.
    And I agree with you that concern for children is a 
critical issue. I have four kids and ten grandchildren, and 
when I cast a vote in this Committee or on the Senate floor, I 
think about the effect that the vote will have on them. So I 
share your concern about children.
    But this hearing isn't really about children. It's another 
attempt to advance an anti-choice agenda. And that's not the 
role of this Subcommittee.
    Now, I've reviewed the hearings that this Subcommittee has 
held during the 108th Congress, and--this Subcommittee has 
jurisdiction over a number of issues--we've had 14 hearings on 
NASA, and a sprinkling of hearings on some other relevant 
topics. But the reason that we have Committees that have 
jurisdiction is so we can cover all of the subjects that are 
our responsibility, and there is no limit to the amount of the 
Committee concerns that we have.
    But this Committee--and this is taken from our website--and 
I hope the witnesses will forgive me, because I don't differ 
with your being able to talk about the issues that concern you. 
We're proud to have both of you here. The question is whether 
or not we are taking time from this Committee when, in fact, we 
have other responsibilities. The Subcommittee on Science, 
Technology, and Space hearings in the 108th Congress 
subcommittee jurisdiction: National Aeronautic and Space 
Administration--we've had 14 hearings there; National Oceanic 
and Atmospheric Administration, one; National Science 
Foundation--we sat in this very room yesterday talking about--
you talk about threats to children--we're talking about the 
climate change that we're witnessing these very days and the 
effect that this could have on families and children and 
communities being wiped out by flooding or atmospheric 
conditions that will not only not permit new life to begin, but 
end life as we know it; National Institute of Standards and 
Technology, not one hearing. Not one.
    And I had mentioned the National Science Foundation. I went 
down to the South Pole to see what we're doing there about 
protecting our communities from being over--from being flooded 
because of changes in climate. Not one hearing--not one--in 
this Subcommittee.
    Office of Science and Technology Policy, pretty important, 
one hearing. Fire administration--Lord knows we've had enough 
problems with forest fires and needs for being ready for any 
attacks that we might have on our country, fire. Federal R&D 
funding, one hearing. One hearing. We haven't really had a 
discussion of the need for stem cell research. Internet, not an 
important subject, I guess, in this committee, this 
Subcommittee on Science, Technology, and Space. Not one hearing 
on the Internet. Earthquake research problems and programs--
we've had one hearing.
    The Committee, I remind you--Subcommittee on Science, 
Technology, and Space. That's what our jurisdiction is.
    Encryption. Are we talking about encryption today so we can 
find out what's happening before we send our kids into battle, 
to find out how we protect our society? No, we're not doing any 
of that. International Science and Technology, one hearing.
    Total, 19. This is over 2 years.
    May I see the other? These are called extra-jurisdictional. 
The anti-abortion agenda--and people are free to make choices; 
I don't want to rob my colleague, Senator Brownback, from 
making his decisions about things, but this, again, the 
Committee on Science and--Subcommittee on Science and 
Technology. Media indecency and violence, two hearings. 
Marriage promotion, one hearing. Marriage promotion. Science 
and Technology. And now we're finding new ways to address the 
title, so we throw the word ``science'' in there to pretend 
that it really is a science interest. ``A New Kind of 
Science.'' That's a whole other subject.
    We've had, in the two years that we've been in business, 12 
hearings in these extra-jurisdictionals, 19 hearings in the 
nature of our business.
    I object to the hearings on--the 11 hearings on those 
issues that are beyond this Subcommittee's jurisdiction--
hearings on divorce, abortion, stem-cell research--thinly 
veiled attempts to push the anti-abortion views. And, again, 
that's up to each individual. That's the wonder of our society, 
is that you can express yourself, express it in the proper 
forum. You can't hear--under the Freedom of Speech, you can't 
holler ``Fire'' in a theater, and, in this Subcommittee, we 
ought not to be reviewing things that don't belong in our 
jurisdiction.
    It's telling that panels are always presented here with 
anti-choice witnesses to prevent a fair debate about some of 
the very serious topics. These 11 hearings promote a certain 
set of cultural values.
    And I don't want to be misunderstood, I have no problem 
with holding these values or voting in any way that's 
consistent with them. That's the individual's right. But I do 
object to hijacking this Subcommittee, at taxpayer expense, to 
push an agenda that properly falls under the purview of the 
Judiciary and Health Committees.
    And I reviewed these hearings that the Subcommittee held, 
and found it shocking as I looked at what we've accomplished. 
Fourteen hearings on NASA, a sprinkling of hearings, five 
others, on some other relevant topics. But when there are 11 
hearings on issues that are beyond this Committee's 
jurisdiction--Subcommittee's jurisdiction, I am discouraged by 
it, and I am challenging the ability of this Committee to 
lead--this Subcommittee--to lead the agenda that we have an 
obligation to fulfil, and proceed with an agenda that pushes 
one person's--the Chairman's--view on what is moral and 
immoral.
    There are other Committees to take care of this, Mr. 
Chairman. If this Subcommittee is going to be used in this 
fashion, then I propose that we hold hearings and get social 
scientists here to testify on the impacts that long-term 
childlessness has on families, whether or not we ought to be 
doing research on all kinds of illnesses and problems, and 
healthcare for children, until perhaps they're age 12, free of 
charge, regardless of family income. Those are the things that 
we might want to talk about. We can hold hearings to determine 
whether or not we are fully funding postnatal care, Head Start, 
and No Child Left Behind.
    Those are the things that I think we ought to be focusing 
on, Mr. Chairman, and I raise my objection with all due respect 
and friendship, but total disagreement.
    Senator Brownback. Thank you.
    Mrs. Sensenbrenner, thank you very much for joining us 
today. As you can tell in the Committee, we've had a lot of 
hearings the last 2 years, and we're delighted that you're 
here. We're delighted that you're here with your sister, and 
look forward to your presentation.
    Be sure you get the microphone, if you can, close so that 
we can all hear your presentation.
    Mrs. Sensenbrenner. OK?
    Senator Brownback. Yes.
    Mrs. Sensenbrenner. Thank you.

       STATEMENT OF CHERYL SENSENBRENNER, BOARD MEMBER, 
        AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES

    Mrs. Sensenbrenner. Thank you, Mr. Chairman and Members of 
the Senate Commerce, Science, and Transportation Subcommittee 
on Science, Technology, and Space.
    Thank you for inviting me to testify on the implications of 
the new prenatal genetic testing technologies for people with 
disabilities and their families. I'm honored to have this 
opportunity.
    My name, as you know, is Cheryl Sensenbrenner, and I am a 
Board Member of the American Association of People with 
Disabilities, AAPD. This is a national nonprofit, nonpartisan 
membership organization promoting political and economic 
empowerment for the more than 56 million disabled children and 
adults in the United States.
    I am also here as a woman with a disability, and, probably 
most importantly, as the proud sister of a woman with Down's 
Syndrom, Tara Rae Warren. I am delighted that my sister, Tara, 
is able to be with us today for this important hearing.
    Whereas my friend and colleague Andy Imparato will approach 
today's topic from a public policy standpoint, my comments 
today will be more personal.
    Although we are currently making progress in public 
attitudes, there is still a strong tendency in American society 
to underestimate the positive contributions that people with 
disabilities are capable of making--if they're given a chance. 
I have seen people continually underestimate what my sister is 
capable of doing, and I have seen what can happen when people 
believe in her and give her an opportunity to shine.
    Because Tara's mental disability is physically recognized, 
she is almost daily subjected to snide remarks, odd looks, and 
put-downs. Tara has faced many obstacles with no fear and total 
perseverance. Through her early education and with our family 
and my mom's support, and dad's, Tara has been able to support 
herself with various jobs. This financial independence has been 
a great sense of pride for Tara--or Tari, as we call her. She 
has been able to pay for her own car--that she drives--and her 
car insurance.
    In the past few elections--and, indeed, in the last 
election--Tara has been a nonpartisan, paid poll-worker in 
Wisconsin. Tara has completed her high school education and 
taken a couple of college courses. She has given speeches to 
student teachers of special education on the challenges of her 
disability. And, later, Tara would be most happy to answer any 
questions you might have--once she stops blushing--after me. 
I'm very proud of her.
    Although I don't often encounter the same degree of 
paternalism that my sister has faced, I can tell you, from my 
own personal experiences living with a disability for all of my 
adult life, that people frequently underestimate or overlook my 
capacity--capabilities, as well. Many people assume that my 
injuries occurred after my marriage to my husband, 
Representative F. James Sensenbrenner, Jr. No, my husband got 
me in a wheelchair or, at my best times, on my Canadian 
crutches; and, today, often I function as I am with a cane, a 
leg brace; and sometimes, in bad times, in a wheelchair.
    This has been a lifelong journey with me since I was 22 
years old. For an example, I can remember when my father--he 
was the AG, Attorney General, in Wisconsin--we were going to a 
bank while I was working at the capital, sitting in the lobby, 
waiting for my dad, and a bank executive came in, looked at me, 
and stated, ``People like that belong on the park benches out 
front, not in our lobby.'' He was holding the money in his bank 
that I was making in my job as a disabled person. I find it 
amazing that someone with a higher education would still think 
with such a closed mind. This is one small example out of 
thousands.
    I can also remember back when the physically disabled were 
determined not-qualified to serve on a jury. I am curious to 
know whether they truly believed that I would be mentally unfit 
due to my physical disability or if it was simply an issue of 
handicap accessibility.
    Being a disabled person can be difficult, but it's not 
impossible to deal with. On the positive side, with the support 
of my dear family and friends, only certain sports and pretty 
shoes with heels remain unapproachable to me.
    When I had children, I didn't have to worry about prenatal 
genetic testing, because the science hadn't evolved to a point 
where that testing was widespread. Indeed, I was initially told 
not to get married or have children or a job. So, in those 
days--we have advanced somewhat from that time for people that 
are disabled.
    I know that in recent years the science and practice of 
prenatal genetic testing has grown, so that now it is very 
common for pregnant moms to be offered screening tests to 
determine the likelihood that their baby would be born with 
conditions like Tara's--Down's syndrome--or spina bifida, which 
is similar, somewhat, to what I have now, or can be.
    I'm concerned that expecting parents are being asked to 
consent to tests without really understanding the pros and cons 
of participating in this kind of testing. I am also even more 
concerned that expecting parents are being given the positive 
results of prenatal diagnostic tests for conditions like Down's 
syndrome--for instance, if they have a positive test and know 
they will have a Down's child--without giving good information 
about what it's like to raise a child with Down's syndrome, or 
what supports and programs exist in the community for people 
with disabled children.
    When you couple the uninformed fears and concerns many 
parents are likely to have when they receive this kind of 
prenatal diagnosis, the pressures they perceive from their 
treating professionals, families, and friends to terminate the 
pregnancy, you have a recipe for uninformed decisionmaking that 
can dramatically reduce the numbers of babies born with Down's 
syndrome and other congenital disabilities.
    As someone who can testify to the great joy and love that 
my sister has brought to me and my family--and, in fact, the 
community and the world--I am saddened and disheartened to 
think that the new genetic technologies would have this kind of 
impact.
    As a parent, I'm deeply troubled by any efforts to use 
prenatal genetic testing to identify genetically ``normal'' or 
``healthy'' children and terminate pregnancies that fail to 
pass this test. Our responsibility as parents is to love and 
nurture our children, whatever challenges they may face. As a 
society, do we really want to live in a world where children 
must pass genetic tests in order to be born?
    I believe we have a moral and ethical responsibility to 
maximize the likelihood that children with disabilities will be 
welcomed into the world like other children, and that their 
families will be supported in their efforts to help their 
children thrive.
    Science and medicine should be used to improve the quality 
of people's lives, not to encourage parents to try to engineer 
an advantage in the genetic lottery for their children.
    If our experience with the prenatal screening and tests 
currently being used for Down's syndrome and spina bifida is a 
harbinger of what is to come, I'm very worried about how the 
new genetic technologies will be used, moving forward. I 
believe that God created a beautifully diverse human population 
for a reason, and we should be humble and proceed with caution 
as we develop tools that can be manipulated to threaten that 
diversity.
    Thank you, Senator, for the opportunity to testify and for 
calling attention to this important topic.
    [The prepared statement of Mrs. Sensenbrenner follows:]

       Prepared Statement of Cheryl Sensenbrenner, Board Member, 
            American Association of People with Disabilities

    Mr. Chairman, Ranking Member Breaux, and Members of the Senate 
Commerce, Science and Transportation Subcommittee on Science, 
Technology and Space:

    Thank you for inviting me to testify on the implications of the new 
prenatal genetic testing technologies for people with disabilities and 
their families. I am honored to have this opportunity. My name is 
Cheryl Sensenbrenner and I am a Board Member of the American 
Association of People with Disabilities (AAPD), a national non-profit, 
non-partisan membership organization promoting political and economic 
empowerment for the more than 56 million disabled children and adults 
in the U.S.
    I am also here as a woman with a disability, and, probably most 
importantly, as the proud sister of a woman with Down syndrome, Tara 
Rae Warren. I am delighted that my sister, Tara, is able to be with us 
today for this important hearing. Whereas my friend and colleague Andy 
Imparato will approach today's topic from a public policy standpoint, 
my comments today will be more personal.
    Although we are certainly making progress in public attitudes, 
there is still a strong tendency in American society to underestimate 
the positive contributions that people with disabilities are capable of 
making if given a chance. I have seen people continually underestimate 
what my sister is capable of doing, and I have seen what can happen 
when people believe in her and give her an opportunity to shine.
    Because Tara's mental disability is physically recognized, she is 
almost daily subjected to snide remarks, odd looks and put downs. Tara 
has faced many obstacles with no fear and total perseverance. Through 
her early education and with her family's support, Tara has been able 
to support herself with various jobs. This financial independence has 
been a great sense of pride for Tara. She has been able to pay for her 
own car she drives and her car insurance. In the past few elections, 
Tara, has been a non-partisan poll watcher in Wisconsin. Tara has 
completed her high school education and taken a couple of college 
courses. She has given speeches to students of special education on the 
challenges of her disability. Tara would be most happy to answer any 
questions you might have--once she stops blushing.
    Although I don't often encounter the same degree of paternalism 
that my sister has faced, I can tell you from my personal experience 
living with a physical disability for all of my adult life that people 
frequently underestimate or overlook my capacities as well. Many people 
assume that my injuries occurred after my marriage to my husband, 
Representative F. James Sensenbrenner, Jr. My husband, Jim, ``got me'' 
in a wheelchair, or at best on Canadian crutches. This has been a 
lifelong journey since I was twenty-two years old. I can remember when 
my father was the Attorney General of Wisconsin going to a bank and 
sitting in the lobby waiting for my father to conduct some personal 
business. I remember a bank executive looking at me and stating 
``people like that belong on the park benches out front and not in our 
lobby.'' I found it amazing that someone with a higher education would 
still think with such a closed mind. I can also remember back when the 
physically disabled were determined not qualified to serve on a jury. I 
am curious to know whether they truly believed that I would be mentally 
unfit due to my physical disability or if it was simply an issue of 
handicap accessibility. Being a disabled person can be difficult, but 
it is not impossible to deal with. On the positive side with the 
support of my dear family and friends, only certain sports and pretty 
shoes with heels remain unapproachable to me.
    When I had my children, I didn't have to worry about prenatal 
genetic testing because the science hadn't evolved to a point where 
that kind of testing was widespread. I know that in recent years the 
science and practice of prenatal genetic testing has grown so that now 
it is very common for pregnant mothers to be offered screening tests to 
determine the likelihood that their baby will be born with conditions 
like Down syndrome and Spina Bifida.
    I am concerned that expecting parents are being asked to consent to 
tests without really understanding the pros and cons of participating 
in this kind of testing. I am also even more concerned that expecting 
parents are being given the positive results of prenatal diagnostic 
tests for conditions like Down syndrome without getting good 
information about what it is like to raise a child with Down syndrome, 
or what supports and programs exist in the community for families with 
disabled children.
    When you couple the uninformed fears and concerns many parents are 
likely to have when they receive this kind of a prenatal diagnosis with 
the pressures they may perceive from their treating professionals, 
family and friends to terminate the pregnancy, you have a recipe for 
uninformed decision making that can dramatically reduce the number of 
babies born with Down syndrome and other congenital disabilities. As 
someone who can testify to the great joy and love that my sister has 
brought to me and my family, I am saddened and disheartened to think 
that the new genetic technologies would have this kind of impact.
    As a parent, I am deeply troubled by any efforts to use prenatal 
genetic testing to identify genetically ``normal'' or ``healthy'' 
children and terminate pregnancies that fail to pass this test. Our 
responsibility as parents is to love and nurture our children, whatever 
challenges they may face. As a society, do we really want to live in a 
world where children must pass genetic tests in order to be born?
    I believe we have a moral and ethical responsibility to maximize 
the likelihood that children with disabilities will be welcomed into 
the world like other children, and that their families will be 
supported in their efforts to help their children thrive. Science and 
medicine should be used to improve the quality of people's lives, not 
to encourage parents to try to engineer an advantage in the genetic 
lottery for their children.
    If our experience with the prenatal screening and tests currently 
being used for Down syndrome and Spina Bifida is a harbinger of what is 
to come, I am very worried about how the new genetic technologies will 
be used moving forward. I believe that God created a beautifully 
diverse human population for a reason, and we should be humble and 
proceed with caution as we develop tools that can be manipulated to 
threaten that diversity.
    Thank you for the opportunity to testify and for calling attention 
to this important topic.

    Senator Brownback. Thank you very much.
    And I would note, as you told me earlier, that you've 
testified here first before, on the House side, so I want that 
to get back to your husband----
    Mrs. Sensenbrenner. No, I haven't. I'm saying I'm waiting, 
sir.
    Senator Brownback. Oh. Well, we have taken this topic up 
first, and I thank you for your testimony.
    You made a statement there at the end about--that you're 
afraid of the harbinger of what the testing for Down's syndrome 
and spina bifida will be on other genetic testing. What can we 
learn from our experience on testing, genetic testing, on spina 
bifida and Down's syndrome, relative to the new sets of 
testing?
    Mrs. Sensenbrenner. Well, I don't know if I can 
specifically answer your question. There are probably people 
that can do--What I can--what I am--I'm concerned about is that 
people--automatically, now, people are not given--
automatically, they're tested, and they don't--they're--they 
see it as a closed door, and that this is horrible. They don't 
understand that it's just a child that has something different, 
and that you can deal with it.
    I don't know--I don't quite understand how to answer your 
question, Senator. All I wanted to make clear was that having a 
child that has a congenital disability is nothing to--it's 
something to look at as a challenge, not as the end of 
opportunities for your parenthood.
    Senator Brownback. Yes, as it has been in your family. It's 
been a great gift of great joy.
    Mrs. Sensenbrenner. Yes. Matter of fact, when I was first 
hurt, we didn't always know if I would always be in the bed. 
And Tari was born, and as she--when she was young, I spent a 
lot of time with her, working with her. It's always best, if 
you have Down's--as I understand it, Tari--to get your 
education going a little early. And she functioned as my legs 
and my body to get things for me as I was working with her. And 
we got to be pretty close that way, didn't we, Sis?
    Ms. Warren. Yes, we did.
    Senator Brownback. Tari, welcome to the Committee. I'm 
delighted that you're here.
    Ms. Warren. Thank you, Senator.
    Senator Brownback. You give speeches to educational groups 
in the country. What do you tell them? What's the heart of your 
message?
    Ms. Warren. Well, the heart of the message is to tell the 
student teachers that I've been talking to--is to accept the 
people who have a disability and to help them when they are in 
trouble, and to be sure that they don't get teased or--try to 
be themselves in the class. They should mainstream them. I was 
mainstreamed. I was mainstreamed in--I did graduate with honors 
in 1989. I was mainstreamed through all my classes. And I did a 
pretty good job, except for one. But, otherwise, I encountered 
lots of people who weren't very nice to me, but I learned to 
live with it. And I think that people who have a disability 
like Down's syndrome should have--just to have, like, someone 
to be there for them in case--if people get rude and 
inappropriate to them in the middle of classes.
    Senator Brownback. You know, the--if you took a vote here 
in the Capitol of the most favorite employee in the whole 
Senate side of the Capitol, I have a bet for who the winner 
would be. And I am certain I would be right on this. And his 
name is Jimmy. He operates the elevator on the Senate side. 
He's a Down's syndrome person, as well. And he is the most 
wonderful, kind, great--he gives me high fives and hugs like 
nobody else does. I love it. And he's just--he brightens my day 
in an incredible way. And I think of how much poorer we would 
be, as a world, or as a Senate, in particular, without Jimmy. 
And my guess is, Tara, for you, that--how much poorer people 
around your world would be without you.
    I really appreciate you, and your showing the rest of us 
how to live. It's kind of you to do.
    Ms. Warren. Thank you, Senator.
    Senator Brownback. Mrs. Sensenbrenner, thanks for coming 
and being an advocate on this cause. As I said stated at the 
outset of the hearing, I don't think there has been another 
hearing in the House or the Senate on this topic, and yet it is 
on us as a topic, and we do have a set of tests that we've been 
doing. And we're going into a season where we're going to be 
able to test for hundreds of things.
    Mrs. Sensenbrenner. I know.
    Senator Brownback. And we really need to have a discussion, 
as a country, about, ``OK, when--if you do these tests, now, 
what does this mean?'' And let's not just say, ``OK, we have to 
have the perfect child here.'' And having five children, 
there's no such thing as a perfect child, and every one of them 
are different. And that's the beauty of it. That's the real 
beauty of it. We need this discussion, and I'm hopeful that you 
can continue to have it with us, and that, Tara, you can 
continue to prod us to have this discussion, in all of its 
beauty and glory.
    Ms. Warren. Thank you.
    Senator Brownback. Thank you both for joining us here 
today.
    I want to call up the second panel. Dr. John Bruchalski--
he's a family practice practitioner in Virginia; Dr. Brian 
Chicoine, Medical Director of the Adult Down Syndrom Center of 
Advocate Lutheran General Hospital, in Park Ridge, Illinois; 
Dr. Kathy Hudson, Director of Genetics and Public Policy 
Center, Associate Professor of Bioethics, Department of 
Pediatrics, Johns Hopkins University--boy, I hope you get that 
all one business card----
    Dr. Hudson. I do.
    Senator Brownback.--Mr. Andrew J. Imparato, President and 
CEO of the American Association of People with Disabilities; 
and Mr. Andrew Kimbrell, Executive Director of the 
International Center for Technology Assessment, Executive 
Director for the Center for Food Safety, here in Washington, 
D.C.
    This is an expert panel, a practitioners panel, that we 
wanted to talk about this same subject with this group, and I'm 
delighted that each of you were willing to join us today.
    We will run the time clock, if we can get it going here, 
probably at five--we'll do it at 6 minutes. That's just a 
guide; although, if you can stay with that--and then we'll 
have--I'd like to have interaction and a dialogue afterwards, 
if we can.
    Let's take the presentations in the order that they were 
introduced. Dr. Bruchalski--did I get that correct?
    Dr. Bruchalski. Yes.
    Senator Brownback. Thank you for joining us, and I look 
forward to your testimony.

STATEMENT OF DR. JOHN BRUCHALSKI, BOARD CERTIFIED OBSTETRICIAN 
                        AND GYNECOLOGIST

    Dr. Bruchalski. Thank you for this opportunity. It is, 
indeed, an honor to be on the same panel as Tara.
    My name is John Bruchalski, and I'm a Board Certified 
Obstetrician and Gynecologist practicing in Fairfax, Virginia. 
I have practiced in the field of OB/GYN since 1987, which 
includes my residency. And I am very thankful for this 
opportunity to testify.
    My career as a private practitioner has spanned the recent 
developments in prenatal genetic testing for Down's syndrome, 
spina bifida, and cystic fibrosis, and now cystic fibrosis at 
the clinical level. I have literally spoken to thousands of 
families about these diseases and these prenatal tests.
    The emphasis of my testimony will be twofold--to show that 
the data we use for counsel is more confusing than clarifying, 
and, second, that the conversation generated may cause 
irreparable damage in the parent-child bond, with implications 
of how the family views individuals with disabilities, or, 
worse, how they view those who have had abnormal testing, but 
are completely normal human beings. More confusing than 
clarifying.
    We are speaking today about maternal screening tests for 
conditions such as Down's syndrome. Screening tests are not 
diagnostic tests; they are meant to be preliminary tests, 
universally applied to those in low-risk populations, the 
results of which determining who will be counseled to undergo 
more accurate, but expensive and invasive--i.e., riskier--
diagnostics-grade testing.
    In regard to Down's syndrome, the vast majority of mothers 
who give birth to Down's syndrome are under the age of 35. And 
so that these screening tests, such as the AFP or the triple 
screen, have, by their nature, an inherently in-built high 
false positive rate--the test is abnormal, but the subject may 
be normal--because the thresholds for declaring a screening 
test result positive is set to capture the most individuals who 
truly have the condition, at the expense of including some--or, 
in this case, many--who do not. It is in this expense that the 
sloppiness of these tests is exposed and, ultimately, the 
damage is done.
    Parents are presented with these screening tests as a 
common, indispensable, accurate, and normal part of the 
prenatal evaluation. The results of these tests provide a 
statistical threshold, risk estimate, or likelihood--one in 
150, one in a thousand, one in 50--that the blood taken from 
mom tells her the risk of--to her unborn child--her fetus has 
of carrying that disease, above the risk that her age 
predisposes her to, that the test--this is what the screening 
test is all about. Many moms are unaware that this a screening 
test, and not a diagnostic or definitive one. And even when 
explained thoroughly, we walk away--they walk away with--they 
walk away with other ideas of what we're trying to convey to 
them; they're walking away with wrong ideas. For someone like 
myself, who has had cancer, when someone says you have that, 
you begin to not hear very well.
    Many moms are unaware that this is a screening test, and 
not a diagnostic or definitive one. Then the next step becomes 
a procedure that aims to obtain tissue or fluid for definitive 
diagnostic purposes, carrying a procedure-related pregnancy-
loss rate of something around one in 200. This is very sloppy 
defensive medicine, as far as we're concerned. This data given 
to parents lacks any diagnostic certainty concerning the health 
or the genetic makeup of their unborn child. It's statistics.
    Second, this attempt to mandate that all mothers have this 
test done, since 97 percent of children with Down's syndrome 
occur in families with no previous history of the syndrome, and 
88 percent are born to women under 35 years of age, is an 
attempt to prevent the wrongful birth legal outcome, or any 
outcome which many feel should have serious consequences, 
including legal liability for the clinician.
    This universal application for the screening test for 
Down's syndrome also lacks appropriate pre-test counsel, such 
as meeting with the families who have had children with such 
conditions. We attempt to do this with our patients. And after 
explaining the poor accuracy of these tests, including the high 
false positive, as well as false negative, rates and the need 
for invasive testing to determine the true condition of the 
baby--or the fetus, most women do not opt for this medical 
screen. In fact, we have had many patients who have transferred 
into our practice precisely because their prior obstetrical 
practice placed guilt and pressure on them to have this test 
that they truly did not want.
    In reference to the present recommendation for universal 
screening for cystic fibrosis, being an asymptomatic carrier 
for the genetic mutation that causes CF is prevalent one in 25 
to one in 30 in the United States, but this carries with it 
some major pitfalls. The gene for CF is very large, and the 
sheer number of mutations that are possible--over 900, to 
date--make all at-risk pregnancies not able to be identified. 
Therefore, the American College wants all OB/GYNs to offer, as 
you had mentioned, to non-Jewish Caucasians and Ashkenazi Jews 
this screening that only looks at 25 to 35 of the most common 
mutations. This is up for yearly review because of the science 
that's driving this.
    This area of CF testing emphasizes the data currently with 
the best of intentions, and training is confusing and not 
clarifying for physicians or patients. With obvious lack of 
clarity in this area for prenatal testing comes a subtle, yet 
profound, undercutting of the unconditional parent-child bond.
    Quote, ``I spend an enormous amount of my time talking with 
mothers, trying to heal the damage that these tests do,'' one 
of my partners exasperatedly told me of his frustration from 
his last several practices that he's been involved with. Let's 
say the screening test is positive. The parent naturally asks, 
``Is my child okay? Is he or she normal?'' Even if the tissue 
diagnosis comes back normal, these parents have not only been 
anxious about the health of their unborn child, they have been 
stripped of their joy about the pregnancy, because, seemingly, 
no amount of postprocedural counseling can erase all the 
anxiety in the minds and hearts of parents created by the 
abnormal screening tests.
    ``There must have been something to it.'' That's a common 
quote that we hear in our office. The anxiety and the lack of 
joy translates into a stigma attached to the child for the 
lifetime of the parent-child-family interaction. This stigma 
that sometimes had to have caused this test to be abnormal 
carries the life of the child with those parents. This is 
irreparable damage done to the family bond.
    Also, in doing the definitive diagnostic procedure, such as 
amniocentesis and chorionic villus sampling, there is the very 
real possibility, if the screening test gives us a false 
positive, which encourages us to do the definitive test, and, 
while doing this procedure, the membranes that harbor the child 
rupture and a miscarriage occurs, or the chronic leakage of 
amniotic fluid occurs, resulting in severe developmental damage 
to the fetus, to the child, only to find out that the child 
investigated by the prenatal genetic screening test was, 
indeed, healthy. That risk has been documented to be somewhere 
between one-half to 3 percent for the rupturing of the 
membranes.
    The loss of a healthy child due to a procedure done because 
a screening test was believed to be more accurate than billed 
causes a profound fracturing of the doctor-patient 
relationship. I know this, because I have personally 
experienced this issue in my own professional life.
    So, in conclusion, the practical clinical application of 
this prenatal genetic testing technology is fraught with non-
definitive relative risks. The unconditional love between 
parent and child, and the joy that this manifests, is destroyed 
with conditional, cautious stigmatization that lasts a 
lifetime. Because of the emotional and physical trauma that the 
Down's syndrome story has provided us, and the fact that I have 
family members with Down's syndrome, I strongly advise that 
this Committee continue to keep this conversation alive in 
regarding to these technologies and the future technologies.
    Thank you very much.
    [The prepared statement of Dr. Bruchalski follows:]

Prepared Statement of Dr. John Bruchalski, Board Certified Obstetrician 
                            and Gynecologist

    My name is John Bruchalski and I am a Board Certified obstetrician 
and gynecologist. I have practiced in my field since 1987, which 
includes my residency, and I am thankful for this opportunity to 
testify at this hearing on prenatal genetic testing technology: 
science, policy and ethics. My career as a private practitioner has 
spanned the recent developments in prenatal genetic testing for Down's 
syndrome, Spina Bifida and now Cystic Fibrosis at the clinical level. I 
have spoken to thousands of families about these diseases and these 
prenatal tests. The emphasis of my testimony, will be twofold: to show 
that the data we use for counseling is more confusing than clarifying 
and, secondly, that the conversation generated may cause irreparable 
damage in the parent child bond with implications of how that family 
views individuals with disabilities, or worse, how they view those who 
have had ``abnormal testing'' but are completely normal human beings.
More Confusing than Clarifying
    We are speaking today about maternal SCREENING TESTS for conditions 
such as Down's syndrome. Screening tests are not diagnostic tests. They 
are meant to be preliminary tests, universally applied to those in low-
risk populations, the results of which determining who will be 
counseled to undergo much more accurate, but expensive and invasive, 
i.e., risky diagnostic-grade testing. Screening tests such as the AFP 
or the Triple Screen have by their nature an inherently high inbuilt 
high false positive rate, (test abnormal, but subject is normal), 
because the threshold for declaring a screening test result positive is 
set to capture the most individuals who truly have the condition at the 
expense of including some, or in this case many, who do not. It is in 
this expense that the sloppiness of these tests is exposed, and the 
damage is done.
    Parents are presented with these screening tests as a common, 
indispensable, accurate, and normal part of the diagnostic evaluation 
of the prenatal medical process. The results of these tests provide a 
statistical threshold, risk estimate or likelihood (i.e., 1/150, 1/
7,000, 1/50, etc.), that the blood taken from the Mom, tells her the 
risk to her unborn child, the foetus, has of carrying the disease that 
the test is SCREENING for. Many Moms are unaware that this is a 
screening test, and not a diagnostic, or definitive one. Then the next 
step becomes a procedure that aims to obtain tissue or fluid for 
definitive diagnostic purposes carrying a procedure related pregnancy 
loss rate of 1/200. (1)
    This is sloppy, defensive medicine. This data, given to parents 
lacks any diagnostic certainty concerning the health or the genetic 
makeup of their unborn child. Secondly, the attempt to mandate that all 
mothers have this test done, since 97 percent of children with Down's 
occur in families with no previous history of the syndrome (2), and 88 
percent are born to women under 35 years of age, is an attempt to 
prevent the ``wrongful birth'' legal outcome or any outcome which many 
feel should have serious consequences including legal liability for the 
clinician. This universal application of the screening tests for Down's 
syndrome also lacks appropriate pre-test counsel such as meeting with 
families who have children with this condition. We attempt to do this 
with our patients, and after explaining the poor accuracy of this these 
tests, including the high false positive as well as false negative 
rates and the need for invasive testing to determine the true condition 
of the baby, most women do not opt for this medical screen. In fact we 
have many patients who transfer into our practice precisely because 
their prior obstetrical practice placed guilt and pressure on them to 
have this test that they truly did not want.
    In reference to the present recommendation for universal screening 
for cystic fibrosis asymptomatic carrier of the genetic mutation that 
causes CF is prevalent (1/25 to 1/30) in the United States, and this 
carries some major pitfalls. The gene is very large and the sheer 
number of mutations that are possible, over 900 mutations described to 
date, make all at risk pregnancies not able to be identified. Therefore 
the American College of OB/GYN wants us ``to offer'' to all non-Jewish 
Caucasians and Ashkenazi Jews this screen that only looks at 25 of the 
most common mutations and this is up for yearly review. (3)
    This area of CF testing emphasizes that the data currently with the 
best of intentions and training is confusing, not clarifying for 
physicians and patients. With obvious lack of clarity in this area of 
prenatal testing, comes a subtle, yet profound undercutting of the 
unconditional parent child bond.

Irreparable Damage to the Family
    ``I spend an enormous amount of time talking with mothers trying to 
heal the damage that these test do,'' one of my partners exasperatedly 
told me of his frustration with these tests. Let's say the screening 
test is positive. The parents naturally ask, ``Is my child okay? Is he/
she normal?'' Even if the definitive tissue diagnosis returns normal, 
these parents have not only been anxious about the health of their 
unborn child, they have been stripped of their joy about the pregnancy 
because seemingly no amount of post-procedural counseling can erase all 
of the anxiety in the minds and hearts of parents created by an 
abnormal screening test result. ``There must have been something to 
it''. This anxiety and lack of joy translate into a stigma attached to 
this child for the lifetime of the parent-child family interaction. 
This stigma that something had to have caused this test to be abnormal 
carries the life of the child with those parents. This is irreparable 
damage done to the family bond.
    Also in doing the definitive diagnostic procedure such as 
amniocentesis and chorionic villus sampling, there is the very real 
possibility that the screening test gives us a false positive result 
which encourages us to do the definitive test, and while doing this 
procedure the membranes rupture and a miscarriage occurs, or a chronic 
leakage of amniotic fluid occurs, resulting in severe developmental 
damage to the fetus, only to find out that the child investigated by 
the prenatal genetic screening test was indeed healthy. The loss of a 
healthy child due to a procedure done because a screening test was 
believed to be more accurate than billed causes a profound fracturing 
in the doctor patient relationship. I know, I have personal experience 
in this regard.

Conclusion
    The practical, clinical application of this prenatal genetic 
testing technology is fraught with sloppy, non-definitive relative 
risks. The unconditional love between parents and child, and the joy 
that this manifests is destroyed with conditional, cautious, 
stigmatization that last a lifetime. Because of the emotional and 
physical trauma that the Down's syndrome story has provided us, and the 
fact I have a cousin with Down's syndrome, I strongly advise this 
committee to continued study of these technologies and their 
implication for individuals with disabilities.

Bibliography
  1.  Prenatal Diagnosis of Fetal Chromosomal Abnormalities, ACOG 
        Practice Bulletin, Number 27, May 2001.
  2.  Adams MM, et.al., Down's syndrome. Recent Trends in the United 
        States. JAMA 1981; 246: 758-760.
  3.  Simpson, Joe Leigh, ``Genetic Counseling and Prenatal 
        Diagnosis,'' Obstetrics: Normal and Problem Pregnancies, 4th 
        edition, edited by Gabbe, SG, Niebyl, JR, and Simpson JL., 
        Churchill Livingstone, New York, pp. 187-219.

    Senator Brownback. Thank you. I look forward to our 
question session when--we will have on that.
    Dr. Chicoine? Did I get that correct?
    Dr. Chicoine. Chicoine.
    Senator Brownback. Chicoine, sorry. Delighted to have you 
here. Thank you for coming in, and I appreciate your 
willingness to testify.

                STATEMENT OF BRIAN CHICOINE, MD,

         MEDICAL DIRECTOR, ADULT DOWN SYNDROME CENTER,

               ADVOCATE LUTHERAN GENERAL HOSPITAL

    Dr. Chicoine. Chairman Brownback, thank you very much for 
giving us the opportunity to testify about prenatal genetic 
technology testing.
    I am Brian Chicoine, the Medical Director of the Adult Down 
Syndrome Center of Advocate Lutheran General Hospital in Park 
Ridge, Illinois. I'd like to share with you my perspective on 
genetic counseling and information provided to families 
prenatally, and how it relates to my work in addressing the 
health needs of adults with Down's syndrome.
    I'd like to submit a more comprehensive written record for 
the--or statement for the record, as well.
    Senator Brownback. It will be in the record in full.
    Dr. Chicoine. Thank you.
    If a literature search is conducting--researching Down's 
syndrome, one finds that the majority of citations deal with 
prenatal diagnoses. The focus is mostly on screening blood 
tests, characteristics or findings on ultrasounds, and other 
methods used to diagnose Down's syndrome prenatally. A small 
number of citations can be found on optimizing care for people 
with Down's syndrome. Little or no research can be found on 
prenatal counseling, particularly with regards to the issue of 
providing information about adults with Down's syndrome.
    Healthcare professionals need to be sensitive to the needs 
of families for genetic counseling that is both supportive and 
balanced. Researchers should examine the individual experience 
of each family in order to determine how best to accomplish 
this goal.
    At the Adult Down Syndrome Center of Advocate Lutheran 
General Hospital, we work to provide the best information and 
care for adults living with Down's syndrome. The Adult Down 
Syndrome Center is a unique collaboration between the National 
Association for Down Syndrome, Advocate Medical Group, and 
Advocate Lutheran General Hospital. The center opened in 
January 1992, at the request of the National Association of 
Down Syndrome, which is the parent group that serves the 
Chicago Metropolitan Area. These parents identified a need to 
provide high quality health and psychosocial services for their 
adult children.
    We have grown to a full-time center, and now serve more 
than 2,500 adults with Down's syndrome. In addition, we have 
published numerous articles and have presented many times at 
educational forums, including at the World Health Organization 
and the National Down Syndrome Society.
    Down's Syndrome is the most common chromosomal cause of 
mental retardation. The incidence is approximately one out of 
800 to one out of a thousand births. It affects all races, 
cultures, and nationalities. Generally, the risk of recurrence 
of Down's syndrome in a future pregnancy is 1 percent greater 
than the baseline, which was just discussed. And the baseline--
again, the baseline risk for having a child with Down's 
syndrome increases with maternal age.
    Blood testing, the maternal triple screening, which was 
discussed, is used as part of the screening process, 
particularly in younger women; and amniocentesis or chorionic 
villus sampling is required to make a definitive prenatal 
diagnosis, and are generally offered to women over 35 or those 
with a positive blood test.
    It is difficult for me to paint an accurate picture of 
adults living with Down's syndrome. Trying to sum up a 
wonderfully diverse group of people is quite a challenge if 
you've not met them personally. On average, adults with Down's 
syndrome function in the mild to moderate range of mental 
retardation, but the range runs essentially the full gamut. 
However, increased level of function is clearly an area that is 
expected to improve with early intervention and other 
opportunities.
    I tell young families that over time we may see what I call 
two syndromes. Our older patients often had little education 
and inadequate healthcare as children, and few opportunities as 
they reached adulthood. The younger people with Down's syndrome 
not only have better education, healthcare, and opportunities, 
but there are increased expectations for their success, and, as 
a result of that, we are seeing greater achievement and 
independence, as certainly was evidenced here a short time ago.
    For years, families were told that their children with 
Down's syndrome would not survive into adulthood. This advice 
guided the family's expectations for their sons or daughters, 
it has caused families to lower their expectations, 
inadequately prepare for the full life span of their child, and 
left them unprepared to deal with health and other issues of 
their adult child.
    During this time, the median age of death for a person with 
Down's syndrome rose from 25 years, in 1983, to 49 years, in 
1997, and the life expectancy of a person with Down's syndrome 
is now 56 years.
    Misinformation has been given to families prenatally. 
Families have shared with me some of their stories about the 
types of information they received when they were pregnant with 
a child with Down's syndrome. Some of the information was 
correct, but some was incorrect, and some of the information 
overemphasizes the negative.
    Some of the information provided during counseling is 
correct, such as: adults with Down's syndrome have a greater 
incidence of certain health conditions, such as diabetes 
mellitus, obesity, osteoporosis, celiac disease, and others. 
And some of the information presented is incorrect or 
misleading. For example, families are often told that all 
people with Down's syndrome develop Alzheimer's disease at a 
young age. While it has been demonstrated that people with 
Down's syndrome over the age of 35 or 40 do develop the 
microscopic changes seen in Alzheimer's disease, the incidence 
of clinical Alzheimer's disease may actually be similar to the 
incidence seen in the general population.
    Unfortunately, many unproven--or much unproven information 
has been recited to families as fact, and has caused a great 
deal of confusion and concern. In addition, usually there's 
information about Down's syndrome that is not shared. The 
incidence of most types of cancer is lower in people with 
Down's syndrome. Hypertension is quite rare. And coronary 
artery disease, the leading killer of people without Down's 
syndrome, is almost nonexistent in adults with Down's syndrome.
    Beyond what is said is the context of how the information 
is communicated. It is important to present a balanced picture 
of the strengths and challenges presented by these very special 
children and adults. There are a number of health conditions 
that are more common in adults with Down's syndrome. With 
improved healthcare and social and education and recreational 
opportunities, many of these problems are not inevitable, and 
the incidence can be reduced.
    There is no question that adults with Down's syndrome face 
challenges. It is important that adults with Down's syndrome, 
their families, and healthcare providers have an appropriate 
and accurate information to help them work through these 
challenges. And it is important that this information be 
provided throughout the life span of a person with Down's 
syndrome.
    I strongly recommend families who have a newborn with 
Down's syndrome, or are pregnant with a child with Down's 
syndrome, that they meet with other families who have a child 
with Down's syndrome. There is some research that is available 
on the experience of families with regards to how they were 
told that their newborn has Down's syndrome. The majority were 
disappointed with how the medical professionals told them that 
and how this information was provided. Referral to a support 
group did improve the experience.
    In conclusion, people with Down's syndrome are living 
longer, living more independently, and reaching for new 
heights. With good healthcare, opportunities for achieving 
their potentials, and more realistic societal expectations, 
only greater accomplishments can be expected. Many of the 
people providing prenatal care or prenatal information about 
Down's syndrome seem to know little about adults with Down's 
syndrome. There is little research that has studied how 
information on children and adults with Down's syndrome is 
being provided to families in prenatal counseling. Families 
have shared with me many of their stories, and these stories, 
as well as the studies, suggest that there is much to learn. 
Healthcare professionals need to be sensitive to needs of 
families for genetic counseling that is supportive and 
balanced. And researchers should examine lived experiences of 
families in order to determine how best to accomplish this 
goal.
    Mr. Chairman, thank you, again, for this opportunity to 
speak with you.
    [The prepared statement of Dr. Chicoine follows:]

Prepared Statement of Brian Chicoine, MD, Medical Director, Adult Down 
          Syndrome Center, Advocate Lutheran General Hospital

    Chairman Brownback and distinguished members of the Senate Commerce 
Subcommittee on Science, Technology and Space, I thank you for giving 
me the opportunity to testify about Prenatal Genetic Technology 
Testing. I am Brian Chicoine, MD, Medical Director of the Adult Down 
Syndrome Center of Advocate Lutheran General Hospital in Park Ridge, 
Illinois. I would like to share with you my perspective on genetic 
counseling and information provided to families prenatally and how it 
relates to my work in addressing the health needs of adults with Down 
syndrome. I would like submit a more comprehensive written statement 
for the record.
    If a literature search is conducted researching ``Down syndrome,'' 
one finds that the majority of citations deal with prenatal diagnoses. 
The focus is mostly on screening blood tests, characteristics or 
findings on ultrasounds, and other methods used to diagnose Down 
syndrome prenatally. A smaller number of citations can be found on 
optimizing care for people with Down syndrome. Little or no research 
can be found on prenatal counseling, particularly with regard to the 
issue of providing information about adults with Down syndrome. Health 
care professionals need to be sensitive to the needs of families for 
genetic counseling that is both supportive and balanced. Researchers 
should examine the individual experience of each family in order to 
determine how best to accomplish this goal. At the Adult Down Syndrome 
Center at Advocate Lutheran General Hospital, we work to provide the 
best information and care for adults living with Down syndrome.

Adult Down Syndrome Center at Lutheran General Hospital
    The Adult Down Syndrome Center is a unique collaboration among the 
National Association for Down Syndrome, Advocate Medical Group, and 
Advocate Lutheran General Hospital. The Center opened in January 1992 
at the request of the National Association for Down Syndrome, the 
parent group that serves the Chicago metropolitan area. These parents 
identified a need to provide high quality health and psychosocial 
services to their adult children.
    We have grown to a full-time Center and now serve more than 2,500 
adults with Down syndrome. In addition, we have published numerous 
articles and have presented many times at educational forums, including 
the World Health Organization and the National Down Syndrome Society.

Down Syndrome
    Down syndrome is the most common chromosomal cause of mental 
retardation. The incidence is approximately 1 out of 800 to 1,000 
births. It affects all races, cultures, and nationalities. Of the 
people with Down syndrome, 95 percent have an extra chromosome 21 and 
the other 5 percent have partial triplication of the 21st chromosome. 
Generally, the risk of recurrence of Down syndrome in future 
pregnancies is 1 percent greater than the baseline risk.
    The baseline risk for having a child with Down syndrome increases 
with maternal age. Blood testing (maternal triple screening) is used as 
part of a screening process, particularly in younger women. This 
detects 60 percent of trisomy 21 pregnancies with a 5 percent false 
positive rate. Amniocentesis or chorionic villus sampling are required 
to make a definite prenatal diagnosis and are generally offered to 
women over 35 years of age and those with a positive blood test.
    It is difficult for me to paint an accurate picture of adults 
living with Down syndrome. Trying to sum up a wonderfully diverse group 
of people is quite a challenge if you have not met them personally. On 
average, adults with Down syndrome function in the mild to moderate 
range of mental retardation, but the range runs essentially the full 
gamut. However, increased level of function is clearly an area that is 
expected to improve with early intervention and other opportunities. I 
tell young families that over time we may see ``two syndromes''. Our 
older patients often had little education and inadequate health care as 
children and few opportunities as they reached adulthood. The younger 
people with Down syndrome not only have better education, health care, 
and opportunities but there are increased expectations for their 
success. We are seeing greater achievement and independence.

Information and Counseling about Down Syndrome
    For years families were told that their child with Down syndrome 
would not survive into adulthood. This advice guided the families' 
expectations for their sons and daughters. It has caused families to 
lower their expectations, inadequately prepare for the full life span 
of their child, and left them unprepared to deal with health and other 
issues of their adult child. During this time, the median age of death 
of a person with Down syndrome rose from 25 years in 1983, to 49 years 
in 1997. The life expectancy of a person with Down syndrome is now 56 
years. However, families have not been getting accurate information.
    Misinformation has also been given to families prenatally. Families 
have shared with me some of their stories about the types of 
information they received when they were pregnant with a child with 
Down syndrome. Some of the information is correct but some is incorrect 
and the information often overemphasizes the negative.
    Some of the information provided during counseling is correct. 
Adults with Down syndrome have a greater incidence of certain health 
conditions such as diabetes mellitus, obesity, osteoporosis, celiac 
disease, sleep apnea, hypothyroidism, atlantoaxial instability and 
other conditions.
    Some of the information presented is incorrect or misleading. For 
example, families are often told that all people with Down syndrome 
develop Alzheimer's disease at a young age. It has been demonstrated 
that people with Down syndrome over the age of 35 or 40 develop the 
microscopic changes that are seen in Alzheimer's disease. However, the 
incidence of clinical Alzheimer's disease does not appear to be 
universal and may actually mirror the incidence seen in the general 
population, albeit on average 20 years earlier. There is much to be 
learned about Alzheimer's disease in people with Down syndrome. 
Unfortunately, much unproven information has been recited to families 
as fact and has caused a great deal of confusion and concern.
    In addition, usually there is information about Down syndrome that 
is not shared. The incidence of most types of cancer is lower in people 
with Down syndrome. Hypertension is quite rare. Coronary artery 
disease, the leading killer of people without Down syndrome, is almost 
nonexistent in adults with Down syndrome. Asthma also seems to be less 
common in adults with Down syndrome.
    Beyond what is said, it is the context or how the information is 
communicated. If every parent were painted a picture of only the 
negative possibilities for their expected child, perhaps no one would 
give birth to a child. It is important to present a balanced picture of 
the strengths and challenges presented by these very special children.
    There are a number of health conditions that are more common in 
adults with Down syndrome. With improved health care and social, 
educational, and recreational opportunities, many of these problems are 
not inevitable and the incidence may be reduced. Obesity is a good 
example. It has been assumed that obesity was inevitable in adults with 
Down syndrome because of a slower basal metabolic rate. Research now 
shows that this is not true and the effects of healthier nutrition and 
an active lifestyle are now being investigated. One disease that is 
more common in adults with Down syndrome that would be expected to 
decrease with improved nutritional status and exercise and recreational 
opportunities is diabetes mellitus.
    There is no question that adults with Down syndrome face 
challenges. It is important that adults with Down syndrome, their 
families and health care providers have appropriate and accurate 
information to help them work through these challenges. It is important 
that the information be provided throughout the lifespan of a person 
with Down syndrome.
    I strongly recommend families who have a newborn with Down syndrome 
or are pregnant with a child with Down syndrome meet with other 
families who have a child with Down syndrome. There is some research 
that is available on the experience of families with regards to how 
they were told their newborn has Down syndrome. The majority were 
disappointed with how they were told or the information that was 
provided. Referral to a support group improved the experience.

Conclusion
    People with Down syndrome are living longer, living more 
independently, and reaching for new heights. With good health care, 
opportunities for achieving their potentials and more realistic 
societal expectations, only greater accomplishments can be expected.
    Many of the people providing prenatal information about Down 
syndrome seem to know little about adults with Down syndrome. There is 
little research that has studied how information on children and adults 
with Down syndrome is being provided to families in prenatal 
counseling. Families have shared with me many of their stories and 
these studies suggest that there is much to learn. Healthcare 
professionals need to be sensitive to the needs of families for genetic 
counseling that is supportive and balanced. Researchers should examine 
the lived experiences of families in order to determine how best to 
accomplish this goal.
    This concludes my remarks. Mr. Chairman, thank you again the 
opportunity to speak about these important issues. I would be happy to 
answer any questions you may have.

    Senator Brownback. Thank you, Dr. Chicoine. And I was just 
sitting here thinking, myself, about the joy that I've met--
that I've had of people that I know with Down's syndrome. And 
when you mentioned that about hypertension, I think, yes, you 
know, Jimmy drops my hypertension----
    [Laughter.]
    Senator Brownback.--whenever I see him. I don't know if 
there's any way to quantify or measure joy, but I--there's 
certainly a large quantity that's there.
    Thank you.
    Dr. Hudson, thank you for joining us today.

STATEMENT OF KATHY HUDSON, Ph.D., DIRECTOR, GENETICS AND PUBLIC 
                POLICY CENTER, BERMAN BIOETHICS 
  INSTITUTE AND INSTITUTE OF GENETIC MEDICINE, JOHNS HOPKINS 
                           UNIVERSITY

    Dr. Hudson. Mr. Chairman, good afternoon, and thank you for 
inviting me to testify on the science, policy, and ethics of 
prenatal genetic testing.
    My name is Kathy Hudson. I'm the Director of the Genetics 
and Public Policy Center at Johns Hopkins University. The 
center was created by a grant from the Pew Charitable Trusts, 
and our mission is to provide objective information and 
analysis on genetic technologies and genetic policies. The 
center doesn't advocate for or against any technology, or for 
or against any policy outcome, but, rather, we help to provide 
information and analysis and policy options that are useful for 
public conversation and for decisionmakers as they consider 
these issues.
    Over the past two years, the center has been investigating 
reproductive genetic testing, and we are about to issue two 
reports. The first, ``Reproductive Genetic Testing, Issues and 
Options for Policymakers,'' presents a range of policy options 
that consider the potential effects, both good and bad, of 
different policy choices. Our second report, ``Reproductive 
Genetic Testing, What America Thinks,'' presents the results of 
our in-depth and ambitious effort to assess what the public 
knows, thinks, and feels about prenatal genetic testing. It 
includes the largest survey of Americans' attitudes yet, as 
well as a very large-scale effort to engage the American public 
in a conversation--in a dialogue, as you mentioned--about these 
technologies.
    In the next few minutes, I'd like to make five brief 
points.
    First, genetic tests give information, information that, in 
the reproductive context, can provide great reassurance or 
precipitate a decision. I want to emphasize that the decision 
to have a genetic test, to get the information, and the 
decision about what to do with the information raise separate, 
though interrelated, issues.
    Second, I'd like to emphasize the importance of preserving 
the right to know and the right not to know genetic 
information. The philosophy of those providing reproductive 
genetic services is non-directiveness. Simply put, that means 
that the implications of these decisions are so profound and so 
personal that the decision of whether or not to have prenatal 
genetic testing, and what to do based on the results, must 
reside with the prospective parents. And, indeed, the majority 
of Americans agree with this approach.
    Third, I'd like to address the issue of test accuracy and 
quality of care. The decisions made based on prenatal genetic 
test results are weighty. And, thus, the accuracy and 
reliability of those tests are of paramount importance. While 
the prenatal tests that are in general, routine use today are 
generally of high quality, there's no government guarantee. 
There is no government review of the Food--by the Food and Drug 
Administration, or any other Federal agency, of genetic tests 
before they are marketed, and there are no proficiency 
requirements under the Clinical Laboratory Improvement 
Amendment for Molecular Genetic Testing, making it difficult to 
evaluate whether laboratories are performing the tests well. 
One possibility is to increase Federal oversight to ensure that 
genetic tests are accurate and safe.
    I'd also like to just briefly mention that our report 
addressed many of the issues that have been raised here about 
the quality of care and the nature of counseling and the 
information, and how to enhance the quality of genetic 
counseling in the reproductive context.
    The fourth issue I'd like to raise is whether we, as a 
society, need to draw a line delineating what tests are 
appropriate in the reproductive context and those that are not. 
There are many different genetic tests available, ranging--
those for fatal childhood conditions--such as Trisomy 13, or 
Tay Sachs--serious disorders, risk of adult onset disorders, 
and, of course, tests for sex.
    Some have raised the specter, even, that we will, 1 day, be 
able to test for and select socially desirable characteristics. 
There is considerable debate within our society about what the 
ethically appropriate uses are for genetic testing in the 
reproductive context. American support for reproductive genetic 
testing depends heavily on their intended use. A majority of 
the general public approves of genetic testing, in the prenatal 
context, for a fatal childhood disease, while a similar 
majority disapproves of that use for traits unrelated to 
health. So at the extremes, there appears to be some general 
agreement about the appropriateness, or not, of prenatal 
genetic tests, but that doesn't address who decides.
    And that brings me to my final point. In closing, I'd like 
to share with you some insights into what the American public 
thinks is the appropriate role of the government in overseeing 
the development and use of reproductive testing.
    While there is a remarkable diversity of views, most 
Americans in our surveys have said that the government should 
not regulate prenatal genetic testing based on ethics or 
morality. And a majority, 63 percent, feel that the government 
should ensure the quality and accuracy of prenatal genetic 
tests. Thus, the American public expects that the government 
will make sure that when they choose to have a prenatal genetic 
test, the results are accurate.
    Thank you.
    [The prepared statement of Dr. Hudson follows:]

   Prepared Statement of Kathy Hudson, Ph.D., Director, Genetics and 
   Public Policy Center, Berman Bioethics Institute and Institute of 
                                Genetic 
                   Medicine, Johns Hopkins University

    Mr. Chairman and members of the Subcommittee, thank you for 
inviting me to be with you today to discuss the science, ethics, and 
policy of prenatal genetic testing.
    My name is Kathy Hudson and I am the Director of the Genetics and 
Public Policy Center and Associate Professor in the Berman Bioethics 
Institute and in the Institute of Genetic Medicine at Johns Hopkins 
University. Established with a grant from The Pew Charitable Trusts, 
the mission of the Genetics and Public Policy Center is to provide 
independent and objective information and analysis on genetic 
technologies and genetic policies. We hope our work provides useful 
tools for decision makers in both the private and public sectors as 
they consider and respond to the challenges and opportunities that 
arise from scientific advances in human genetics.
    Genetic testing is undergoing tremendous changes. Scientists are 
identifying disease-causing mutations in humans at a remarkable pace 
and developing tests to detect them. There are over 1,000 genetic tests 
available or in development, all of which could potentially be used in 
prenatal genetic testing. The growing availability and use of genetic 
testing in the reproductive context presents a host of complicated 
social, legal and ethical issues. I applaud this Committee for its 
foresight in taking up this issue and welcome the opportunity to share 
with you the results of the Center's work and experience in this arena.
    The Genetics and Public Policy Center has spent the past two years 
investigating reproductive genetic testing, which includes prenatal 
genetic testing, the topic of today's hearing, as well as carrier 
testing and preimplantation genetic diagnosis. We are about to issue 
two reports on the topic. The first, Reproductive Genetic Testing: 
Issues and Options for Policymakers, aims to help focus and facilitate 
the discussion about reproductive genetic testing by outlining key 
scientific and medical facts, considering ethical and social 
implications, and assessing both current and potential oversight for 
the development and use of reproductive genetic tests. It presents a 
range of policy options supported by expert analysis that consider the 
potential effects, good and bad, of distinctly different policy 
directions.
    Our second report, Reproductive Genetic Testing: What America 
Thinks, presents the results from our in-depth effort to understand 
what the public knows, thinks and feels about genetic technologies. We 
undertook this effort so that policy leaders and other decision makers 
would have more nuanced and sophisticated information about public's 
attitudes towards these technologies than has previously been available 
to-date. This effort is the largest and most ambitious public opinion 
work to-date on this issue. We have surveyed over 6,000 Americans, 
conducted focus groups, and interviewed hundreds of individuals who 
have had personal or professional experience with these technologies. 
Recognizing that one of the drawbacks to both qualitative and 
quantitative public opinion research is that individuals are asked to 
comment on complex scientific and ethical issues which they may have 
had little prior opportunity to consider, we conducted an extensive 
public engagement activity this summer to obtain more informed, 
reflective opinions from the general public. Over 500 citizens in six 
cities across the U.S. (Sacramento, CA; Seattle, WA; Kalamazoo, MI; 
Fort Worth, TX; New York City, NY; and Nashville, TN) and over 100 
citizens on-line took part in The Genetic Town Hall: Making Every Voice 
Count. Participants were provided with background information about the 
technology and issues, heard contrasting viewpoints from ``the 
experts'', and engaged in discussion with their fellow citizens about 
the issues of concern to them.
    The Center does not advocate for or against these technologies or 
for a particular policy outcome. Rather we believe that policy makers 
should have access to objective analysis, comprehensive information 
about what the public hopes for and fears from these technologies, and 
robust policy options to guide the development and use of reproductive 
genetic testing.

Scientific Background
    Genetic testing is the laboratory analysis of DNA, RNA, or 
chromosomes. Testing can also involve analysis of proteins or 
metabolites that are the products of genes. Genetic testing is done to 
predict risk of disease, screen newborns for disease, identify carriers 
of genetic disease, establish prenatal or clinical diagnoses or 
prognoses and direct clinical care. Testing can be done using many 
different biological samples, including blood, amniotic fluid (from 
which fetal cells are obtained) or individual embryonic cells.
    Two forms of analysis are possible. Cytogenetic analysis is used to 
detect abnormalities in chromosomal number and/or structure. Molecular 
genetic testing examines the DNA sequence of individual genes.
    In general, prenatal screening includes those tests and procedures 
used to assess fetal risk for an abnormality, including genetic 
disorders. It does not provide a definitive diagnosis of a genetic 
abnormality but indicates whether diagnostic tests are warranted. The 
advantage of prenatal screening is that a normal result provides 
earlier reassurance and an abnormal result allows the option of further 
diagnostic tests.
    Prenatal genetic testing (or prenatal genetic diagnosis) is genetic 
testing of fetal cells obtained through procedures such as 
amniocentesis and CVS. Prenatal genetic testing of a fetus requires two 
steps: an invasive procedure (amniocentesis or CVS) to obtain fetal 
genetic material and an analysis of the material to identify genetic 
abnormalities or characteristics. Fetuses may be at increased risk for 
genetic abnormalities because of the mother's age (35 or greater at 
delivery), because the parents already have a child or other family 
member with a genetic condition, because one parent has a balanced 
chromosome rearrangement or because prenatal screening or carrier 
testing indicates an increased risk.
    Amniocentesis is usually performed in the second trimester of 
pregnancy, at approximately 15-20 weeks gestation. A small amount of 
amniotic fluid is removed from the sac that holds the developing fetus. 
The fluid contains fetal cells that provide the material for genetic 
analysis. Amniocentesis is generally considered a relatively simple and 
safe procedure when performed by an experienced physician. Although 
miscarriage after amniocentesis is infrequent (one in 200-400 cases), 
it is a major reason the procedure is not routinely offered to all 
women. Infection and leakage of amniotic fluid are other rare 
complications of amniocentesis.
    Chorionic villus sampling (CVS) is an alternative to amniocentesis, 
and can be performed during the first trimester of pregnancy. Fetal 
cells are obtained through biopsy of the chorionic villi--the cells 
that will become the placenta. CVS is generally done at 10-13 weeks 
gestation. Fewer physicians do CVS than amniocentesis, and as a result, 
it is not available in all areas. The risk of miscarriage after CVS is 
approximately 1 in 100, as compared with the 1/200-400 risk following 
amniocentesis. CVS can be used to determine all disorders that can be 
diagnosed by amniocentesis except the presence of neural tube defects, 
since CVS does not include analysis of amniotic fluid alpha-
fetoprotein.

Prenatal Genetic Testing: Points to Consider
    With that background in mind, I would like to make five main points 
about prenatal genetic testing.
1. Information and its use
    Genetic tests give information--information that, in the 
reproductive context, can provide great reassurance or precipitate a 
decision. Before pregnancy, prospective parents may learn through 
carrier testing whether or not they are at risk of having a child with 
a genetic disease and may have to decide whether or not to try to have 
a baby. During pregnancy, prenatal genetic testing can rule out or 
diagnose a genetic disease in utero. When a genetic anomaly is 
identified, prospective parents make the difficult decision of whether 
to continue a pregnancy, or not. There are a host of issues related to 
prenatal genetic testing. Some of the issues relate to the information 
obtained from the testing, others relate to the profound decisions that 
prospective parents make based on the results. But I want to emphasize 
that the decision to have a genetic test--to get information--and the 
decision about what to do with the information, are two separate, but 
interrelated issues.
    People differ in their desire to obtain information about the 
future. Since most genetic tests show no genetic problems, many find 
the information reassuring. Others want the information in order to 
have the opportunity to prepare emotionally, financially, and medically 
for the birth of an affected child. For these individuals, knowing as 
much as possible about the health of the fetus, as early in the 
pregnancy as possible, is of primary interest. Others, however, prefer 
to decline testing and welcome the child first, and then address any 
health problems the child may have. For them, prenatal testing may seem 
intrusive and unnecessarily worrisome. For couples who would consider 
abortion in case of a serious genetic condition, information about the 
condition and the prognosis helps them make the decision whether or not 
to terminate the pregnancy.
    There are probably as many reasons to undergo prenatal testing--or 
to refuse it--as there are parents. Whether someone will ultimately 
accept or decline testing, and what course of action they will take 
based on the information testing provides, is impossible to predict. 
But as this Committee considers whether prenatal genetic testing is in 
need of Congressional attention, I would urge you to treat the 
information and the decision about what to do with the information as 
separate matters.

2. Preserving the right to know--and not to know
    The philosophy of those providing, reproductive genetic testing is 
``non-directive'' genetic counseling. Simply put, this means that, 
because the implications of these decisions are so profound and so 
personal, the decision whether or not to have prenatal genetic testing, 
and what to do with the test results, must reside with the prospective 
parents. Indeed there is strong support among Americans for this 
approach. A majority of Americans (64 percent) agree with the statement 
\1\ ``We ought to let people decide for themselves when it is 
appropriate to use reproductive genetic technologies because the 
consequences are so personal.'' Although most health care providers 
practice non-directive counseling in providing information about the 
risks and benefits of testing and the choices that may be faced 
depending on results, some observers have raised the concern that 
prospective parents may feel pressured to agree to prenatal genetic 
testing--pressure from their health care provider or from society at 
large.
---------------------------------------------------------------------------
    \1\ From Genetics & Public Policy Center 2004 Survey of 4,834 
Americans.
---------------------------------------------------------------------------
    Some fear that as testing becomes available for an increasing array 
of inherited diseases and conditions, couples will face growing medical 
and societal pressure to use all available technology--on the theory, 
perhaps, that if it is knowable, it should be known. Fear of 
liability--that they could be charged with failing to consider all 
potential genetic problems--could drive providers to seek as much 
information as genetic testing can provide. And as screening and 
testing become earlier and capable of detecting a broader range of 
conditions, the concern is that society will see reproductive testing 
as the ``right'' and ``responsible'' thing to do. Some believe that 
individuals will face growing medical and societal pressure to avoid 
the birth of a child that has not ``passed'' all the requisite genetic 
tests. On the other hand, some have argued that the more widespread 
genetic testing becomes, and the more each individual knows about his 
or her unique genetic makeup, the more society will be tolerant of 
human differences. Rather than expecting each fetus to meet some 
definition of genetically ``normal,'' the knowledge that no individual 
is a ``perfect specimen'' may lead to greater acceptance of every 
individual and less pressure to use all available technology to have a 
``perfect'' child.
    Our policy report addresses these issues. Clearly, attention should 
be paid to preserving the rights of prospective parents not to use 
prenatal genetic testing. This can be accomplished by improving the 
counseling and access to information couples receive. Currently, 
information about prenatal testing is conveyed in a variety of settings 
and contexts. Sometimes it is a physician who discusses prenatal 
testing with the patient, sometimes a nurse or midwife and sometimes a 
patient is referred to a genetic counselor. Providers have varying 
levels of knowledge and comfort discussing these issues, and often very 
little time in which to cover all of the information adequately. Thus, 
patients may end up making decisions based on incomplete or inaccurate 
information. Some may proceed with testing without fully considering 
the decisions they may have to make depending on the results of the 
tests. Health care providers may present these tests as routine, just 
like all the other tests one gets during pregnancy, which may explain 
why patients sometimes report feeling pressured to agree to testing. 
Enhancing the genetic literacy of providers or providing better access 
to genetic counseling could help alleviate these concerns.
    If a genetic condition is found during prenatal genetic testing, 
careful attention to how test results are conveyed and ensuring parents 
have access to the complete clinical picture can assist families in 
making informed decisions. Some disability advocates say that providers 
who discuss prenatal screening and testing describe conditions in the 
most extreme clinical terms and assume that parents will want to 
terminate an affected fetus. They believe that providers are 
predisposed to counsel in favor of that decision, without giving 
sufficient context to the prospective parents about what it would 
actually be like to raise a child with the particular disorder. One 
direct approach is to enhance the counseling available to parents by 
making sure that genetic counseling includes access to information from 
people living with genetic diseases and their families 'so that 
prospective parents may better understand the reality of having a child 
with the disease. Patient advocacy organizations working on behalf of 
people with the condition could work with providers to facilitate such 
interactions.
    Importantly, a more direct or holistic approach would be to ensure 
that society continues to support all prospective parents, including 
those who make the decision not to test, or not to end a pregnancy and 
that there continues to be a range of legal protections and support for 
people with disabilities and their families.

3. Ensuring test accuracy and quality care
    The decisions made on the basis of prenatal genetic tests are 
weighty--if a prospective parent is going to decide whether or not to 
continue a pregnancy on the basis of a test result, the accuracy and 
reliability of the test is of utmost importance. The prenatal genetic 
tests routinely used have low false positive and false negative rates 
and are of generally high quality. But, right now government oversight 
of genetic testing is patchy at best. There are at least two issues 
here. The first is to make sure that a test is clinically valid before 
it goes to market. The second is to ensure that laboratories are 
performing the tests correctly so that the results are reliable. More 
attention needs to be paid to the role of Federal agencies in making 
sure that genetic tests being used by laboratories are accurate and 
reliable.
    In our policy report we provide a detailed analysis of the current 
regulatory environment for reproductive genetic testing. Government 
oversight in this area is limited and fragmented. There is no 
government review of tests by the Food and Drug Administration (FDA) or 
any other Federal agency before they are marketed. In addition, 
although laboratories performing prenatal genetic testing are regulated 
by the Centers for Medicare and Medicaid Services (CMS) through the 
Clinical Laboratory Improvement Amendments of 1988 (CLIA), there are no 
specific requirements under CLIA to show proficiency in molecular 
genetic testing, making it difficult to evaluate laboratory performance 
of genetic tests. Interestingly, in our 2002 survey, we found that only 
30 percent of respondents knew that the Federal Government does not 
review or approve reproductive genetic tests before they go on the 
market.
    One possibility is to increase Federal oversight of genetic testing 
to ensure it is accurate and safe. FDA and CMS may have the authority 
currently to expand their role. In addition, Congress could pass 
legislation delegating additional authority to these agencies to ensure 
that prenatal genetic testing is done right.
    Although professional groups have issued guidelines for providers 
for the appropriate use of some genetic tests, there are currently only 
a handful of guidelines for a genetic testing compared to the large 
number of genetic tests available. The number of genetic tests 
available is rapidly increasing, and there is no technological barrier 
to using them in prenatal genetic testing.
    In the absence of government regulation, professional self-
regulation is often a valuable tool. But the sheer number of tests and 
the speed with which they are developing, means that professional 
societies such as American College of Obstetricians and Gynecologists 
and the American College of Medical Genetics are hard pressed to keep 
up. In our policy report, we propose several options to address the 
need for more professional guidelines in the absence of more robust 
Federal oversight. One possibility would be that Federal funding could 
be made available through the agencies of the Department of Health and 
Human Services to help facilitate guideline development.
    As mentioned previously, another approach to improving care is to 
improve the information that patients have. The quality of patient care 
would be enhanced if health providers were more knowledgeable about 
testing and prospective parents had all the information and counseling 
they needed to understand the choices they are making and the 
implications of those choices. Perhaps most importantly, counseling, 
screening and testing needs to be offered when parents are able to make 
the best use of the information. Most experts agree that genetic risk 
information and reproductive genetic testing options should be 
discussed with prospective parents before pregnancy during routine 
visits. The health care provider should take a family history and 
assess genetic risk based on family history, maternal age and ethnic 
background and discuss carrier testing options. Carrier testing done 
before pregnancy allows prospective parents to know their risks without 
having to make a decision to terminate a pregnancy.

4. For what purpose
    There are many different genetic tests available, and questions 
abound as to whether, and how to regulate what people are testing for. 
There are tests for fatal childhood conditions such as Trisomy 13 or 
Tay Sachs disease. There are tests for serious disorders including Down 
syndrome, cystic fibrosis, and sickle cell anemia. Tests are also 
available for adult-onset disorders, such as Huntington disease, that 
would not affect the individual for many years, during which time a 
treatment may be discovered. There are also genetic tests that identify 
predisposition to, or increased risk of, developing a disease such as 
breast cancer as an adult. There is considerable debate about which of 
these tests are ethically appropriate for use in the reproductive 
context.
    Many observers are concerned that the use of prenatal genetic 
testing will escalate to the point where it is used to test for what 
some call ``designer traits''--characteristics unrelated to health such 
as intelligence or athletic ability. These most controversial tests, 
however, are not yet, and may never be, available in any context 
because these complex attributes result from the interaction of a host 
of environmental and genetic factors.
    Americans' support for the use of reproductive genetic testing 
depends heavily on the circumstances under which it is being used. In a 
2004 survey conducted by the Genetics & Public Policy Center, 
respondents were asked a set of questions about the appropriateness of 
using prenatal testing to find out whether a fetus will:

   develop a fatal childhood disease;

   be a good match to donate his or her blood or tissue to a 
        brother or sister who is sick and needs a transplant;

   have a tendency to develop a disease like adult-onset 
        cancer;

   be a certain sex; and

   have desirable characteristics like high intelligence or 
        strength (hypothetically).

    About two-thirds of the general public approved of the use of 
prenatal genetic testing for a fatal childhood disease and for tissue 
matching. A slight majority of survey participants approved of using 
reproductive genetic testing technologies to identify alterations 
associated with a tendency to develop an adult-onset disease like 
cancer. There was less support for using testing to identify or select 
sex and a majority disapproved of using hypothetical prenatal genetic 
testing to identify characteristics like intelligence or strength. 
Thus, a majority of Americans approve of prenatal genetic testing to 
identify health-related genetic characteristics and a similar majority 
disapprove of its use to identify traits. Attitudes towards prenatal 
genetic testing vary somewhat by race, education, religion, income and, 
as shown, by sex but follow the same general pattern with a majority of 
all groups supporting prenatal genetic testing for health-related uses.



5. Diverse Views on Government Oversight of Prenatal Testing
    Lastly, I would like to share with you some insights into what the 
American public thinks is the appropriate role of government in 
overseeing the development and use of reproductive genetic testing. In 
our April 2004 survey we asked 4,834 individuals whether the 
government:

   should regulate prenatal genetic testing based on quality 
        and safety

   should regulate prenatal genetic testing based on ethics and 
        morality

   should regulate prenatal genetic testing based on both 
        quality and safety AND ethics and morality

   should not allow prenatal genetic testing at all

   should not regulate prenatal genetic testing at all.

    Their responses are shown in the graph below and reveal the 
remarkable diversity of views present among Americans.



    In conclusion, genetic tests provide information. There are a 
number of steps that could be taken to ensure that people have the 
right to know and the right not to know genetic information, to ensure 
that the information is accurate, and that society continues to support 
all prospective parents and their children. The Genetics and Public 
Policy Center would be happy to provide additional information and 
analysis as you consider prenatal genetic testing or other issues 
raised by advances in human genetics. Thank you.

    Senator Brownback. Thank you, Dr. Hudson.
    And, Mr. Andrew Imparato, thank you for joining us--
President and CEO of American Association of People with 
Disabilities.

STATEMENT OF ANDREW J. IMPARATO, PRESIDENT AND CHIEF EXECUTIVE 
   OFFICER, AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES 
                             (AAPD)

    Mr. Imparato. Yes, thank you, Senator Brownback, for having 
this hearing.
    And I am Andy Imparato. I'm the President of the American 
Association of People with Disabilities. We're a membership 
organization promoting political and economic empowerment for 
children and adults with all types of disabilities of all ages 
in the U.S. And I'm proud to say that Cheryl Sensenbrenner is 
one of our board members, and I was delighted to--that you had 
her come and testify, as well, today.
    Senator Brownback. I might add, you had an intern in our 
office, this last year, who was just a crackerjack. I hope I 
can get her back, full-time employment, when she finishes 
college.
    Mr. Imparato. Stacey Survasis. She had a wonderful 
experience----
    Senator Brownback. Yes, she's----
    Mr. Imparato. I know you have another intern who's 
participating in the program that we're involved with, as well.
    Senator Brownback. Yes.
    Mr. Imparato. You know, the real point that I wanted to 
make today is that the disability rights movement needs to be 
part of this discussion and part of this debate. And I'm 
delighted that you started with Cheryl Sensenbrenner, a woman 
with a disability, and her sister, Tara, giving their 
perspective on this issue.
    One of the challenges that I think we run into is, if we 
let doctors and scientists control the debate, if you have to 
have a Ph.D. to participate in the debate, or an M.D., you're 
going to miss important human perspectives on what it means to 
have a disability.
    My own personal connection to disability, I have bipolar 
disorder, or manic-depression. A lot of people have told me 
that there's a strong genetic link to that. If I look in my 
family, I can see that. I'm worried about what's going to 
happen in the future if people can do tests to find out that a 
child is likely to have manic-depression. If they've had a bad 
experience with somebody with manic-depression, is that going 
to color their decisionmaking? And what kind of a context are 
they going to be given when they're given the information from 
the test?
    One of the most basic principles of the disability-rights 
movement is that disability is a natural part of the human 
experience that, in no way, should limit a person's ability to 
make choices, pursue meaningful careers, live independently, or 
participate fully in all aspects of society. When you hold that 
principle up against some statements that we hear from 
ethicists and from scientists--and I know you've got some blown 
up here in the front of the room--the statements are completely 
inconsistent with the notion that disability is a natural part 
of the human experience and does not equate to a negative, 
inherently.
    A lot of people talk about a disability as if it were a 
tragedy, but disability need not be, and should not be, seen as 
a tragedy to be avoided, but as part of human diversity that 
can be accommodated and viewed as a source of strength, pride, 
and identity. Tragedies occur when our society artificially 
limits the ability of disabled people to participate fully in 
community life. When individuals are warehoused in nursing 
homes and other institutions because of a lack of funding for 
community-based support, when children are isolated and fall 
victim to the low expectations of teachers who lack the 
preparation or imagination to meet their needs, or when 
qualified workers seek employment and encounter prejudice that 
thwarts their career goals, that's where the tragedy occurs.
    I think it's important, as we talk about new genetic tests 
and technologies, that we be cognizant of our history in this 
country of eugenics and what we've done to people with 
disabilities in the name of eugenics.
    In 1927, in the case of Buck versus Bell, Justice Oliver 
Wendell Holmes ruled that he thought it was appropriate to 
forcibly sterilize people who were classified as 
``feebleminded,'' so that they could not have a child. And this 
category included people with psychiatric disabilities, people 
with intellectual disabilities, and people with neurological 
disorders. In that decision--again, this was in 1927--Justice 
Holmes wrote, ``It is better for all the world if, instead of 
waiting to execute degenerate offspring for a crime or to let 
them starve for their imbecility, society can prevent those who 
are manifestly unfit from continuing their kind.''
    Who decides who is manifestly unfit? This kind of ideology 
led to people with disabilities being one of the first groups 
that Hitler went after, and the Nazis went after, in the 
Holocaust, to exterminate as part of the T-4 program. And one 
would hope that the reactions to the holocaust and the advent 
to the disabilities rights and independent living movements in 
the U.S. and around the world would have put an end to eugenic 
efforts to eliminate people with disabilities. Certainly, the 
holocaust should have sensitized the medical and ethical 
communities to the dangerous potential of eugenic ideologies.
    But, unfortunately, if we look at the rhetoric of some 
modern scientists and ethicists, we haven't put this issue to 
bed. Bob Edwards, the esteemed embryologist who created 
Britain's first test-tube baby remarked, at an international 
fertility conference in 1999, that the increasing availability 
of prenatal screening for genetic disease gave parents a moral 
responsibility not to give birth to disabled children. 
``Soon,'' he pronounced, ``it will be a sin of parents to have 
a child that carries the heavy burden of genetic disease. We 
are entering a world where we have to consider the quality of 
our children.''
    Peter Singer, a bioethics professor at Princeton, has 
written that, quote, ``It does not seem quite wise to increase 
any further draining of limited resources by increasing the 
number of children with impairments.''
    These kind of statements, to me, are examples of hate 
speech. They're examples of not understanding what people with 
disabilities are capable of achieving, how we feel about the 
quality of our own lives, and really, to me, harken back to the 
1920s and to our ugly history of eugenics in this country and 
other countries.
    I agree with a lot of the recommendations that have been 
made previously, and they're in my written testimony. I think 
it's critical, again, that people with disabilities be part of 
the public debate about what we do with these technologies. I 
think it's essential that families have an opportunity to talk 
to families that have children with disabilities when they're 
given diagnostic test results, and they be encouraged to do so.
    I also think it's essential that people with disabilities 
be encouraged--and family members of people with gene-linked 
disabilities--be encouraged to go into genetics counseling as a 
profession, because they have personal experience with these 
conditions, and can convey that in their role as a counselor.
    But, most important, I think that our public policy must be 
crystal clear that no family will ever--and I agree with 
Kathy's point on this--no family will ever be penalized for 
choosing not to have prenatal genetic diagnostic tests or for 
choosing to go forward with a pregnancy after a disability has 
been prenatally diagnosed. And no treating physician or 
treating professional should be penalized if their patient 
chooses not to have a test or chooses to go forward with the 
pregnancy.
    And, last, it's critical that we build a network of support 
for families adjusting to the news that their baby is likely to 
have a disability, and that we expand programs like early 
intervention, affordable quality healthcare, respite care, 
accessible housing, and other forms of family support so that 
families can move forward with a pregnancy without having to 
incur severe financial and emotional hardships as they work to 
make their newborn is getting the best quality care possible.
    Again, thank you for having this year. With all respect to 
Senator Lautenberg, I think this is an appropriate topic for 
this Committee and others. Kathy and I have testified in front 
of the Health, Education, Labor and Pensions Committee on the 
need for legislation prohibiting discrimination on the basis of 
genetic information, which she referenced. So, clearly, there 
are other committees that need to be involved, but, to me, this 
is, in part, an issue of science and technology policy. So 
thank you.
    [The prepared statement of Mr. Imparato follows:]

Prepared Statement of Andrew J. Imparato, President and Chief Executive 
    Officer, American Association of People with Disabilities (AAPD)

    Mr. Chairman, Ranking Member Breaux, and Members of the Senate 
Commerce, Science and Transportation Subcommittee on Science, 
Technology and Space:

    Thank you for the opportunity to provide testimony regarding the 
important topic, ``Prenatal Genetic Testing Technology.'' I am honored 
to have this opportunity. My name is Andrew J. Imparato and I am the 
President and Chief Executive Officer of the American Association of 
People with Disabilities (AAPD), a national non-profit, nonpartisan 
membership organization promoting political and economic empowerment 
for the more than 56 million children and adults with disabilities in 
the U.S.
    With more than 100,000 individual members around the country, AAPD 
is the largest membership organization bringing together the diverse 
populations that make up the disability community. AAPD operates 
programs in the areas of leadership development, internships, mentoring 
and career exploration, civic participation, public policy advocacy, 
and member benefits. Founded on the fifth anniversary of the Americans 
with Disabilities Act (ADA), AAPD advocates for policies that are 
consistent with the goals of the ADA: equality of opportunity, 
independent living, economic self-sufficiency, and full participation 
in all aspects of society. My testimony today will address some of the 
disability rights issues that must be considered as the technology of 
prenatal genetic testing continues to develop.
    As person with a disability that likely has a genetic link (bipolar 
disorder) and a civil rights lawyer, I am here today because I am 
concerned about the increasing potential of the new genetic 
technologies to be used in a manner that discriminates against 
individuals with disabilities. I am also concerned about the rise of a 
new eugenics that threatens to undo some of the important advances in 
how our society views children and adults with disabilities.
    One of the most basic principles of the disability rights movement 
is that disability is a natural part of the human experience that in no 
way should limit a person's right to make choices, pursue meaningful 
careers, live independently, and participate fully in all aspects of 
society. Disability need not be seen a tragedy to be avoided, but as 
part of human diversity that can be accommodated and viewed as a source 
of strength, pride and identity. Tragedies occur when our society 
artificially limits the ability of disabled people to participate fully 
in community life; when individuals are warehoused in nursing homes and 
other institutions because of a lack of funding for community-based 
supports; when children are isolated and fall victim to the low 
expectations of teachers who lack the preparation or imagination to 
meet their needs; or when qualified workers seek employment and 
encounter prejudice that thwarts their career goals.
    As we examine the implications of prenatal genetic testing 
technologies, it is important that we remember the history of eugenics 
in the U.S. and the very real negative impact that this history had on 
the lives of people with disabilities, especially people with mental 
disabilities. In 1927, in the case of Buck v. Bell, Justice Oliver 
Wendell Holmes wrote a decision for the U.S. Supreme Court upholding 
the practice of involuntary sterilization of people who were classified 
as ``feeble-minded'' (a broad category that included not just people 
with psychiatric and intellectual disabilities but also people with 
seizure disorders and other neurological conditions). Writing for the 
Nation's highest court, Justice Holmes opined: ``It is better for all 
the world, if instead of waiting to execute degenerate offspring for 
crime, or to let them starve for their imbecility, society can prevent 
those who are manifestly unfit from continuing their kind.'' Buck v. 
Bell, 274 U.S. 200 (1927).
    In this now infamous ruling, Justice Holmes was supporting a world 
view that was in vogue among many American intellectuals at the time, 
and a view that became widely held among the Nazis in Germany. 
Physically and mentally ``defective'' people were among the first 
targets of the Holocaust, as Hitler's ``T-4'' program systematically 
exterminated disabled and chronically-ill Germans who were perceived as 
threatening the genetic purity of the Aryan race.
    One would hope that reactions to the Holocaust and the advent of 
the disability rights and independent living movements in the U.S. and 
around the world would have put an end to the eugenic efforts to 
eliminate people with disabilities. Certainly, the Holocaust should 
have sensitized the medical and ethical communities to the dangerous 
potential of eugenic ideologies. Unfortunately, if we examine the 
rhetoric of some influential modern scientists and ethicists, we can 
see the emergence of a new eugenics tied to the rapid advances in 
scientific understanding of the human genome.
    For example, Bob Edwards, the esteemed radiologist who created 
Britain's first test-tube baby, remarked at an international fertility 
conference in 1999 that the increasing availability of prenatal 
screening for genetic disease gave parents a moral responsibility not 
to give birth to disabled children. ``Soon,'' he pronounced, ``it will 
be a sin of parents to have a child that carries the heavy burden of 
genetic disease. We are entering a world where we have to consider the 
quality of our children.''
    Closer to home, Peter Singer, a bioethics professor at Princeton, 
has written that ``it does not seem quite wise to increase any further 
draining of limited resources by increasing the number of children with 
impairments.'' Singer has even gone so far as to defend the ethics of a 
parent's choice to kill a disabled infant within a certain number of 
days after its birth. His Princeton colleague, molecular biologist Lee 
Silver, writes about a future in which the wealthiest in society will 
be able to pay for genetic modifications, resulting in a societal 
segregation between the ``GenRich'' and the ``Naturals.'' In this 
society, according to Silver,

        ``The GenRich--who account for 10 percent of the American 
        population--all carry synthetic genes. All aspects of the 
        economy, the media, the entertainment industry, and the 
        knowledge industry are controlled by members of the GenRich 
        class. . . . Naturals work as low-paid service providers or as 
        laborers. . . . [Eventually] the GenRich class and the Natural 
        class will become entirely separate species with no ability to 
        cross-breed, and with as much romantic interest in each other 
        as a current human would have for a chimpanzee.''

From Remaking Eden: Cloning and Beyond in a Brave New World (New York, 
Avon Books, 1997, pages 4-7).
    This kind of rhetoric, which should trouble anyone concerned about 
American ideals like equal opportunity and a just society, is 
particularly alarming for many of us in the disability rights movement. 
As Colorado disability activist and writer Laura Hershey has observed,

        The application of genetic knowledge to the repair of damaged 
        genes, for the purposes of treating certain illnesses, may 
        offer welcome benefits to some people with disabilities. But 
        genetic research is likely to be put to other, more insidious, 
        uses--such as denying health insurance, even jobs, to people 
        whose genes predispose them to medical problems. Another threat 
        is the implementation of eugenic policies to ``weed out'' 
        certain types of people from the population. Thus, along with 
        the much-heralded scientific advances offered by genetic 
        research, disability activists nervously witness a resurgence 
        of eugenic thinking.

``Will Genetic Research Lead to Eugenic Policies?,'' August 26, 1999, 
from Laura Hershey's online column Crip Commentary.
    Because society continues to devalue the quality of life of people 
with disabilities, based on fears, myths and stereotypes that some 
people associate with particular disabling conditions, it is critical 
that people living with disabilities and their families play a large 
role in the ongoing public debates about how the new prenatal genetic 
testing technologies will be used. Equally important, the perspective 
of people with disabilities and their families should be incorporated 
into the education of physicians, genetics counselors, and other 
professionals who are interacting with expecting parents as they make 
choices about which tests to have and what to do in light of the 
results.
    To the greatest extent possible, expecting parents who receive 
positive test results should be given an opportunity to meet with and 
talk to individuals and families who have experience with the 
particular disability that has been indicated. There is no substitute 
for this kind of first-person account of the joys and challenges that a 
child with a disability can pose for a family. This kind of exposure 
can demystify what the diagnosis means and begin the process of 
building a support network that will be critical for the family to 
develop as it prepares for the birth. One way to facilitate this 
outcome would be to create incentives for people with gene-linked 
disabilities and their family members to go into genetics counseling as 
a profession.
    One of the dangers of the expansion of prenatal genetic testing 
technologies is that expecting parents will experience pressures to 
terminate their pregnancies from medical professionals and insurers. 
Doctors may want to avoid a complicated delivery and insurers may want 
to avoid expenses associated with the child's disability. Our public 
policy must be crystal clear that no family will ever be penalized for 
choosing not to have prenatal diagnostic tests or for choosing to go 
forward with the pregnancy after a disability has been prenatally 
diagnosed. Similarly, we need to protect medical professionals from 
being penalized or held liable in the event their patients elect to 
avoid prenatal tests or choose to move forward with a pregnancy where a 
disability has been prenatally diagnosed.
    Finally, we need to work to build networks of support for families 
adjusting to the news that their baby is likely to have a disability, 
and to expand programs like Early Intervention, affordable quality 
healthcare, respite care, accessible housing, and other forms of family 
support so that families can choose to move forward with a pregnancy 
without having to incur severe financial and emotional hardships as 
they work to make sure their newborn is getting the best quality care 
possible.
    As President Bush remarked when he introduced his New Freedom 
Initiative for people with disabilities in February of 2001,

        Wherever a door is closed to anyone because of a disability, we 
        must work to open it. Wherever any job or home, or means of 
        transportation is unfairly denied because of a disability, we 
        must work to change it. Wherever any barrier stands between you 
        and the full rights and dignity of citizenship, we must work to 
        remove it, in the name of simple decency and simple justice.

    Our challenge is to make sure that the growing technology of 
prenatal genetic testing does not erect new barriers to the full rights 
and dignity of citizenship, and that our values of simple decency and 
simple justice enable us to avoid the pitfalls of the new eugenics.
    Thank you again for calling attention to this important growing 
technology, and for your desire to get a disability perspective on this 
difficult topic.

    Senator Brownback. Well, I obviously think it is, as well. 
And it's a key part, and it's on us, and I think it's something 
that we really need to have a good public discussion and a 
legal framework around it. Thank you very much for your 
testimony. There was excellent thought put forward.
    Mr. Kimbrell, good to have you back with the Committee--
Executive Director, International Center for Technology 
Assessment.

              STATEMENT OF ANDREW KIMBRELL, J.D.,

          EXECUTIVE DIRECTOR, INTERNATIONAL CENTER FOR

                     TECHNOLOGY ASSESSMENT

    Mr. Kimbrell. It's good to be back with you, Mr. Chairman.
    And, yes, I am the Executive Director of the International 
Center for Technology Assessment, and we do assess cutting-edge 
technologies in transportation, commerce, and science. I wish 
Senator Lautenberg were here, because my organization 
spearheaded litigation against the EPA to try and establish 
greenhouse gases as pollutants. We're joined by 11 states and 
five municipalities. And I certainly share his view that 
greenhouse--the greenhouse crisis is very important and does 
affect generations. But I would take issue with the Senator in 
his diminishing this extremely important issue that you've 
brought before us today; and I'm so glad you have, because it 
is so rarely discussed.
    And I'm very, very pleased to be with Andy Imparato, who's 
done such great work here. And I'm looking forward to Kathy 
Hudson's work. I know many people who have been involved in 
that study, and I'm--I think it's going to be a very important 
addition to this very important debate.
    And, having said that, I want to--I've submitted testimony 
on a number issues, but I want to follow up on what Andy 
Imparato said, because this is really important, to put this 
discussion in the framework of a hundred years of eugenic 
history in this country and elsewhere.
    The eugenics that most of us are familiar with happened 
postnatally. They were based on political agendas or social 
efficiency. And the techniques that were used were 
sterilization. We sterilized over 60,000 people in this 
country, involuntarily, through 1958. Fifteen states still have 
those laws on their books, by the way, Mr. Chairman.
    And, additionally, it was based on a kind of biological 
determinism and racial determinism that made people--biology 
was your destiny. And, therefore, if we didn't approve of your 
destiny, you didn't--you were unable to--sometimes not even 
survive. Often, we didn't allow you to have children, through 
forced sterilization.
    We're not talking about that. The new eugenics is a little 
different than the old eugenics. But I think it's--it is just 
as threatening. And this eugenics is not happening postnatally, 
it's happening prenatally. And the techniques are no longer the 
rather blunt techniques of extermination or sterilization, but, 
rather, subtle techniques that we're talking about today, both 
in prenatal and now, with the new techniques, they're 
preimplantation genetic diagnosis, where we can actually try 
and create children.
    And I think that what's very important to this Committee 
and, I hope, to this country, is, Are we going to begin a new 
era of commercial eugenics for the profit of a few corporations 
and the ability of scientists and corporations to patent 
genes--and even patent embryos--is going to be driving this new 
eugenics? But the result will be the same, as has been 
described by this panel.
    So this is an extremely important question, Should we begin 
the commerce of eugenics? Should we begin the commerce where 
eugenics becomes a common practice? And it also is a very 
critical scientific question, because, just like biological 
determinism controlled the eugenics of the past, so genetic 
determinism is now controlling this new revolution.
    I'm sure everybody on the panel is aware, as I am, that we 
have new results in the Human Genome Project, that you talked 
about in your opening remarks, Mr. Chairman. Originally, we 
thought we were going to have about 130,000 genes, because 
that's the numbers of proteins, the number of traits of 
proteins, for creating human beings. It turned out we only had 
about 30,000 to 35,000 genes. And, just a week and a half ago, 
the International Human Genome Project said, ``You know what? 
We only have about 20,000 genes.'' That's about as much as a 
worm. So we have as many genes as worms have, but at least some 
of us have more traits.
    [Laughter.]
    Mr. Kimbrell. So where did all those traits--what's 
creating all those traits? If it isn't the gene, what's 
creating all those traits? We only have as many genes as worms. 
You know, we've been sold, kind of, a snake-oil thing here for 
several decades, that this genetic determinism was our biology 
and was our destiny. And what scientists are now saying is, 
that is simply not true. This genetic determinism is a triumph 
of orthodoxy over fact.
    I just want to read, very briefly here, from the Scientific 
American of November 2003. ``And they say, you know, the 
essential dogma is dead, this genetic determinism, and proven 
to be false by the Human Genome Project. And they say it will 
take years, perhaps decades, to construct a detailed theory 
that explains how DNA, RNA, and the machinery of all of life 
fit into an interlocking self-regulating system. But there is 
no longer any doubt that a new theory is needed to replace the 
central dogma that has been the foundation of molecular 
genetics and biotechnology since the 1950s.'' This is 
Scientific American.
    In my testimony, I've included testimony by Dr. Richard 
Stroehmann, 25 years research director for the Muscular 
Dystrophy Association, where he says that less than 2 percent--
less than 2 percent--of all diseases--less than 2 percent--are 
actually caused by a single gene, are monogenetic; the rest of 
caused by multifactual areas, including the environment, 
including the interaction of proteins, new discoveries they're 
making in RNA, and what they used to call junk DNAs--completely 
complicated, nothing to do with that simple model: one gene, 
one disease. Very small percentage of diseases.
    And yet--and this is just by my count; I'd bet members of 
the panel have something to add to this--I have read that there 
is a gene for anxiety attacks. I have read that there is a gene 
for alcoholism. I have read that there is a gene for 
homosexuality. I have read that there is a gene for IQ. I have 
read that there's a gene for criminal behavior, a gene for 
obesity, a gene found, apparently, by some British researchers, 
for female intuition.
    [Laughter.]
    Mr. Kimbrell. A gene for shyness. This was reported in the 
Washington Post last year, a gene for shyness. I thought the 
schools might be able to use that. And, of course, the gene for 
manic-depression.
    And what makes this propaganda--and that's what it is, 
commercial propaganda for people who are trying to sell this--
sell this new eugenics--because that's what this is about, 
commercial eugenics--is that, unfortunately, people believe it. 
The alcoholism gene became a joke. The homosexuality gene led 
to, actually, some indictments for fraud. But 60 percent of 
Americans still believe that alcoholism is due to a defective 
gene.
    And in polls that we have seen--and these are just the ones 
that we've selected; I'd be very interested in Kathy's work--we 
have 1 percent of Americans said that they would abort for sex 
selection; 6 percent said they would abort a child that might 
be predisposed to Alzheimer's; 11 percent said that they would 
abort a child predisposed to obesity.
    Senator Brownback. Wow.
    Mr. Kimbrell. Now, the--unfortunately, this is not simply 
theoretical. That eugenics is occurring. We know sex selection 
is occurring in every one of the technologies we talked about 
today. Every one of the technologies already--including 
preimplantation genetic diagnosis--has already been used for 
sex selection, as the President's Council on Bioethics issued 
its report--reported. So it's already happening. This isn't 
theoretical. You know, we're behind the game on this one. And, 
you know, we've already tried to create a market where people 
don't want happy children, they want people that they're happy 
with.
    And, as somebody who has appeared before you many times, 
Mr. Chairman, representing pro-choice groups, I do not want to 
see the pro-choice movement being used as a smokescreen for 
these new eugenics. I do not want a woman's right to choose to 
be transformed into a free pass to this new commercial 
eugenics. I think it would be a disaster for the pro-choice 
progressive movement for that to happen. And I certainly think 
if we prevent--and we should--if we could prevent sex 
discrimination in the workplace, shouldn't we prevent sex 
discrimination in who gets to live?
    So, this is a very historic issue that we've brought up 
today, and I hope that our legislators are up to it, because we 
have to craft very important policy prohibitions right now on 
eugenics, while preserving the reproductive rights so many of 
us believe in.
    This is going to be an enormous challenge, but, I think, by 
starting the discussion today, you've taken at least the first 
step in that direction. I thank you for holding these hearings.
    [The prepared statement of Mr. Kimbrell follows:]

   Prepared Statement of Andrew Kimbrell, J.D., Executive Director, 
             International Center for Technology Assessment

     History does not repeat itself, but it does rhyme--Mark Twain

    Preimplantation Genetic Diagnosis (PGD) is only one of many 
emerging genetic and reproductive technologies in need of broad public 
discussion and regulation, but we view PGD as a gateway technology. 
PGD, if permitted to continue unregulated, could pave the way to new 
eugenics, where children are literally selected and eventually designed 
according to a parent's desires and fears.
    Recent rapid developments in PGD indicate that we are stumbling 
down a slippery slope toward this future rendering a policy response an 
urgent matter. Finally unfettered developments of PGD applications in 
the U.S. attest to the general failure of the U.S. policy regarding 
genetic and reproductive technologies. This policy failure must be 
corrected if we are to prevent a new eugenics in the U.S. and abroad.
    Germany, Austria, Ireland, Switzerland, and Southwest Australia 
have banned PGD outright. Other nations, including the United Kingdom, 
France, the Netherlands, Belgium, Italy, and Greece have limited the 
use of PGD. Even in the US, until recently, PGD was used exclusively 
for medical purposes.
    Today, two thirds of the 50 or so fertility clinics in the world 
offering PGD are in the US. Some clinics are blatantly performing PGD 
for selection.\1\ Many other clinics have used PGD to avoid late-onset 
diseases like Alzheimer's. A growing number of couples are using PGD to 
select an embryo that would grow into a child intended to be a tissue 
match for its sibling. None of these applications were subject to 
formal regulatory review or public deliberation prior to their use. In 
the case of sex selection, the practice specifically violates the 
voluntary guidelines of the American Society of Reproductive 
Medicine.\2\
---------------------------------------------------------------------------
    \1\ Aron Zither, ``A girl or a boy, you pick,'' Los Angeles Times, 
July 23, 2002, A1.
    \2\ American Society of Reproductive Medicine,1999, ``Sex selection 
and preimplantation genetic diagnosis,'' Fertility and Sterility 
72(4):595-598.
---------------------------------------------------------------------------
    The U.S. lack of regulation has resulted in advocates of expanded 
PGD in other countries to push for more permissiveness abroad. Some of 
the advocates, including Robert Edwards, who 25 years ago performed the 
first successful IVF procedure in humans, explicitly promote the new 
eugenic approach. Edwards has predicted that ``Soon it will be a sin 
for parents to have a child which carries the heavy burden of genetic 
disease. We are entering a world where we have to consider the quality 
of our children.'' \3\
---------------------------------------------------------------------------
    \3\ Edwards speaking at European Society of Human Reproduction and 
Embryology as reported in Metro July 5, 1999.
---------------------------------------------------------------------------
    In the United Kingdom groups have already organized protests 
against this new eugenics. People Against Eugenics \4\ organized a 
September 30, 2004 protest at a British pro-eugenics conference at the 
Royal Society in London. The press release denounced the eugenics 
conference organizer, the pioneer of IVF, Robert Edwards as the link 
between the old-fashioned state sanctioned eugenics and the new free-
market version. It notes that Edwards, who 25 years ago, performed the 
first successful IVF procedure in humans is the former President and a 
leading member of the British eugenics society.\5\
---------------------------------------------------------------------------
    \4\ E-mail from peopleagainsteugenicsQhotrnail.com on September 30, 
2004.
    \5\ The Eugenics Society founded in 1907, changed its name to the 
Galton Institute in 1989.
---------------------------------------------------------------------------
    Today, twenty-five years after the birth of Louis Brown from 
Edward's IVF technique, some one million children have been born from 
the process of IVF. The paralleled development of genetic testing has 
resulted into the merger of genetic testing and assisted reproduction 
into preimplantation genetic diagnosis (PGD). Parents can now choose 
which of their embryos to implant in the mother's womb based on the 
outcome of more than 1,000 genetic tests that potentially could be 
performed on the embryos.
    At birth, Chloe O'Brien seemed no different than any other healthy 
baby, but Chloe was the pioneer product of the new technology of PGD. 
Born in March 1992, she was the first baby to be genetically screened 
as an embryo for a genetic defect, cystic fibrosis (CF), before being 
implanted into her mother's womb.\6\
---------------------------------------------------------------------------
    \6\ Larry Thompson, ``Cell Test Before Implant Helps Insure Healthy 
``Test-Tube'' Baby,'' Washington Post, April 27, 1992, A1.
---------------------------------------------------------------------------
    In the 12 years since Chloe's birth, up to 10,000 \7\ children have 
been born after a preimplantation genetic screening. Chromosome 
abnormalities such Down syndrome and single gene defects including CF, 
Tay Sachs, muscular dystrophy and sickle cell anemia have been screened 
with PGD.
---------------------------------------------------------------------------
    \7\ The President's Council on Bioethics, Beyond Therapy: 
Biotechnology and the Pursuit of Happiness, October 2003, p. 53.
---------------------------------------------------------------------------
    These tests screen for some diseases like Tay Sachs, which disease 
results in short brutal lives for the children with the disease, but 
also for diseases like Downs where children can live into their 50s or 
later. Genetic testing for these diseases is not new in that many of 
them are already tested for through amniocentesis.

PGD accelerates trends begun through prenatal testing
    While in the U.S. there are no national data on how many 
pregnancies are terminated as the result of prenatal testing, some 
regional results may highlight what decisions are being made through 
pre-natal diagnosis. Interestingly, some data suggest that more women 
may be carrying Down syndrome babies to term. A study at Harvard-
Pilgrim Health Care found that while the incidence of pregnancies with 
Down syndrome in the HMO had increased from 2 per 1,000 in 1992 to 6 
per 1,000 in 1996, there was a significant trend toward carrying 
fetuses with Down syndrome to term. In 1992, almost 100 percent of 
fetuses prenatally diagnosed with Down syndrome at the HMO were 
terminated; in 1994-95, this figure was 65 percent.\8\
---------------------------------------------------------------------------
    \8\ M.D. Macmillin and S.P. Parker at the American Society of Human 
Genetics, November 1, 1996.
---------------------------------------------------------------------------
    Rates of pregnancy termination for Down syndrome vary considerably 
between hospitals and between ethnic and religious groups. A 2004 study 
by the CDC of Down syndrome in Atlanta women found a lower portion of 
elective termination among black women as compared to white women.\9\
---------------------------------------------------------------------------
    \9\ C. Siffel, A. Correa, J. Cragan, C.J. Alverson, Prenatal 
diagnosis, pregnancy terminations and prevalence of Downs syndrome in 
Atlanta. Birth Defects Res Part A Clinical Mol. Teratol. Sept. 2004; 
70(9): 565-71.
---------------------------------------------------------------------------
    A study of pregnancy terminations for Downs in Boston in 1996 found 
that rates of termination varied widely between the north and south 
shores of Boston even though both groups of women received genetic 
counseling from the same people. Apparently women with deeply held 
beliefs about abortion decided to terminate the Down syndrome fetus at 
a much lower rate than women who did not have the same beliefs. 
Improvements in societal attitudes and support services for children 
with Downs also seemed to change the numbers of women choosing not to 
terminate their pregnancies. Women who are better prepared for their 
child's condition may also be more willing to carry a pregnancy to 
term. Some researchers report, however, that most women carrying 
fetuses whose disorders are usually fatal at in early infancy choose to 
terminate those pregnancies.\10\
---------------------------------------------------------------------------
    \10\ The Impact of Prenatal Diagnosis on Down Syndrome, 
Anencephaly, and Spina Bifida, Gene Letter, March 1, 1997 in 
www.genesage.com/professionals/geneletter/archives/theimpact.html.
---------------------------------------------------------------------------
    Many parents of children with Down syndrome consider them to be 
special children. A United Methodist minister from New England and his 
wife have a child with Down syndrome that he considers a gift from God.

        ``We fluctuated between accepting and rejecting the Downs 
        diagnosis . . . That day we also got word that the chromosomal 
        test confirmed the Downs condition; by now the news was 
        expected and absorbed . . . almost exactly a week after birth, 
        we had our exit interview with our nurse in charge, wrapped 
        baby up and buckled her into our inspected car seat, and 
        gingerly drove back to our apartment and began the awe-some 
        process of becoming full time parents.

        She is lovely. (She) is made in God's image. She is a letter 
        from God that says, ``I love you.'' As I began jotting down 
        notes for today late at night, she was lying first on my 
        shoulder, then on my lap, then on the bed between (her mother) 
        and I. Her touch is wonderful. Her face testifies to God's 
        glory.'' \11\
---------------------------------------------------------------------------
    \11\ Letter from Rev. Tim Atwater to Jaydee Hanson, Nov. 2, 2002.

    Unlike prenatal diagnosis, that might be used by a couple to 
prepare for child that has a genetic disease, preimplantation genetic 
diagnosis is likely to result in a decisions to exclude from 
implantation ANY embryo that has a suspected genetic disease or trait 
that might lead to disease in later generations. In this respect, 
preimplantation diagnosis, even more than prenatal diagnosis is a 
eugenics practice. By excluding individuals that might live with 
genetic diseases for many years, PGD is a form of negative eugenics. 
The designer baby wherein ``positive'' characteristics are selected for 
is not yet here, but it is a short step away.

PGD promotes both genetic discrimination and more IVF procedures
    If we fail to pass legislation to prohibit all forms of genetic 
discrimination, parents may feel even more pressure not to have 
children with known genetic diseases. In these cases, they may choose 
to have IVF combined with PGD to avoid having a child with 
``avoidable'' genetic diseases. If that happens, the brave new world of 
free market eugenics will have arrived.
    Some argue that PGD should be a standard part of IVF practice. PGD 
is now performed routinely at one of the world's leading IVF clinics, 
the Reproductive Genetics Institute in Chicago. ``It should be done for 
every IVF cycle, in my view,'' says Yury Verlinsky, the institute's 
director. ``It doubles or triples the implantation rate, while 
decreasing dramatically the miscarriage rate.'' The overall effect, 
says Verlinsky, is to more than double the average success rate per IVF 
cycle, so that couples have a greater chance of conceiving a child and 
to do so sooner.\12\
---------------------------------------------------------------------------
    \12\ Philip Hunter, Preimplantation Genetic Diagnosis: Studies 
begin to assess how screening might improve IVF success rates, The 
Scientist Jun. 21, 2004.
---------------------------------------------------------------------------
    PGD is still an experimental procedure. We do not know what long 
term health damage is caused to the early embryo as a result of 
removing one of its cells for genetic analysis. Furthermore, it 
requires a woman to use IVF, burdensome and risky procedure in order to 
have a child. Hormonal treatments required for egg extraction have 
caused long-term health problems in women. Low implantation rates and 
the high costs of the procedure \13\ encourage fertility specialists to 
implant multiple embryos at the same time, resulting in high rates of 
multiple births. WF infants moreover have twice the risk of major birth 
defects than those conceived naturally. Ironically, by encouraging more 
women to undergo WF as a strategy to avoid birth defects, the 
fertilization industry may be producing more birth defects.
---------------------------------------------------------------------------
    \13\ M. Hansen, J.J. Kurincuzuk, C. Brower, and S. Webb, ``The risk 
of major birth defects after intracytoplasmic sperm injection and in 
vitro fertilization,'' New England Journal of Medicine (2002) 346:731-
737.
---------------------------------------------------------------------------
    Nonetheless, fertility clinics as promoting PGD for more than just 
the most awful birth defects. Mohammed Taranissi, who runs the Assisted 
Reproduction and Gynaecology Centre in London, says that the industry 
is considering promoting other kinds of PGD even more. It is possible 
to test embryos for the genes that will cause certain ``late onset'' 
diseases, such as a form of Alzheimer's, which can occur in middle age 
and some cancers. Doctors could identify and select embryos that would 
have a healthy childhood and youth, but are destined to die 
prematurely. ``Is this something that we should do? That to me is a 
very important issue,'' said Mr. Taranissi.\14\
---------------------------------------------------------------------------
    \14\ Sarah Boseley, Are we on the genetic slippery slope? The 
Guardian, July 22, 2004.
---------------------------------------------------------------------------
    If IVF becomes still more common and more health insurers beginning 
paying for IVF, the combination of WF and PGD will likely mean the 
exclusion for the genetic pool of families having WF any of the genes 
that we are able to test for.
    The absence of any real Federal regulation in this area will make 
it likely that parents will have to make difficult decisions with 
little guidance. There are only about 1,000 genetic counselors in the 
entire country, too few to effectively counsel an increased number of 
families seeking to use genetic testing. Moreover, only three states 
currently license genetic counselors and many health plans have dropped 
coverage for genetic counseling. Without independent counseling, the 
very people that have a financial interest in testing embryos will be 
advising couples on which embryos should be kept.

The New Eugenics as a form of ``Cold Evil''
    The fertilization industry has become like many of our other 
massive corporate and government bureaucracies wherein evil no longer 
requires evil people to purvey it. We are witnessing the 
``technification'' of evil. Unfortunately, we have utterly failed to 
register the appropriate recognition and abhorrence of this new form of 
institutional evil brought about through our economic and technological 
systems. The tragic result of this failure is that this technological 
``cold'' evil flourishes. If a totalitarian state were to propose 
eliminating all of its differently abled residents, we would rightly 
denounce that as the ``hot'' evil of genocide. If our society embarks 
on technological strategy of eliminating its future disabled members 
through a free-market technology should we be silent in the face of 
this ``cold'' evil of eugenics?
Recommendations for Regulatory Guidelines for PGD

Limit genetic testing of embryos to those conditions that result in 
early and painful death of children, such as anencephaly, Tay Sachs, 
Lech Nyan's Disease.

Prohibit negative eugenics in the case of all other genetic conditions.

Prohibit the use of PGD for selecting for non-disease characteristics 
such as height, weight, intelligence, personality traits, behavior or 
gender.

Implement a complete ban on the genetic modification of human embryos, 
including the introduction of synthetic genes or chromosomes.

    Senator Brownback. Thank you. This is an excellent panel 
and an excellent discussion.
    Let me start on the issue of what we've learned from Down's 
and spina bifida testing. And Mrs. Sensenbrenner touched on 
this at the end of her testimony, that she doesn't feel like 
that we've started off with a very good track record with our 
ability to test on these two, and then now we're expanding into 
a field of four or five hundred, or maybe more, genetic tests 
that we can go with.
    What have we learned from the practice of genetic pre-birth 
testing on Down's syndrome and spina bifida? Has it impacted, 
substantially, the number of children born with these two 
characteristics? What has it done, in practice, to those 
families? And I don't know, if one of the three doctors, who 
would want to--or do we know, from this country, or do we have 
better studies from other countries of what it's done?
    Dr. Hudson. There have been studies that have looked at the 
number of Down's births in the United States since, apparently, 
we started marking whether or not a birth was a Down's birth on 
birth certificates. And so you can actually follow the numbers, 
over time, and there has been a reduction in the actual number 
of live Down's births, compared to what is the expected number, 
since the advent of testing. So there has been a decrease in 
the number of live-born Down births.
    Senator Brownback. By--do you know, Dr. Hudson, the numbers 
in this----
    Dr. Hudson. I could provide that for the record. I'd be 
hesitant to give you a number, because I'm bad with numbers.
    Senator Brownback. Yes. If you could, I would appreciate 
that, for the record. Because, what I have looked at, it's 
substantial. It's a substantial number. And my experience in 
other countries has been that this has really changed the 
number of Down's syndrome people in those societies.
    [No information was provided at the time of print.]
    Dr. Hudson. I think it's important to keep in mind that 
when people--that screening does have a high false-positive 
rate, and that does cause anxiety among those women. When they 
get a screening test back that says, ``You are at increased 
risk of having potentially a chromosomally abnormal fetus,'' 
they have this period of anxiety before they have the absolute 
diagnostic test. And some people will choose, potentially, not 
to have that diagnostic test if there's nothing that they would 
differently based on that information. But some people want the 
information, and they want the information in order to prepare 
medically, to prepare financially, to prepare emotionally for 
the birth of that child, or to make the always-difficult 
decision to terminate that pregnancy. So the information is, 
sort of--has a whole set of issues associated with making 
decisions and what kind of information. I think the other 
panelists have really raised some very good issues here about, 
How do we present information and what kind of information is 
presented about what the test will tell you and what the 
disease or disorder means for families and the children 
affected with those disorders?
    Dr. Bruchalski. Just to follow up on Dr. Hudson's comments 
on a practical, clinical level. Her comments are exactly right. 
Parents believe that a simple blood test can tell them the 
health of their child. That's how they approached this. That's 
how they're--oftentimes, that's the information given. And what 
they don't realize is, is that the screening test will--may 
provide an answer that then prompts a more definitive test--
whether it's amniocentesis, or whether it's chorionic villus 
sampling, what have you--that carries with it a significant 
risk to terminating the life of their child, or the fetus 
inside of them. And what happens is, is that when mothers and 
fathers listen to this information, they're not fully--they're 
as confused about what is screening and what is diagnostic, and 
the anxiety that that provokes. Because they would never 
subject their child to an airline ticket that would crash one 
in 200 times. They just wouldn't do that. And yet that simple 
blood test, that statistic, then prompts further discussion and 
further decisions made by the parents. At least clinically, 
moms want to spend time with their sick or their children with 
disabilities. And I think Dr. Hudson's comments are correct, 
there are people who really use this information to try to 
prepare the family for the care of this individual.
    I just know that I'm sick and tired--as a clinician, my 
profession has taken multiple hits over the last several years 
in reproductive issues. We put out--when it came to 
contraceptives and IUDs, we seem to put them out ahead of time. 
We're finding that there are side effects, whether it's with 
IUDs, what have you. And then we have the Women's Health 
Initiative, several years ago, that brought to light some risks 
to menopausal hormones. We're giving Viagra to the fathers and 
the husbands, but we're pulling away hormones from women 
because of further knowledge that has come to light.
    Women don't trust us. ``How dare you. You've let us down in 
the past,'' whether it's contraceptively or whether it's with 
peri-menopausal or menopausal hormones. And now I think it's 
coming to roost with prenatal genetic testing. ``What you 
promised is not what we're getting.'' Because I know the 
difficulty that we spend, the time that we spend in our office 
talking to parents about false positives and false-negative 
tests, that they've come either from our practice or from other 
practices.
    Senator Brownback. Do we know anything from other 
countries, numbers, tests on Down's syndrome children?
    Dr. Hudson, do you know anything on that? Mr. Kimbrell, do 
we----
    Dr. Hudson. I'm sure it's known, but I don't know it, off 
the top of my head.
    I would want to make----
    Senator Brownback. Mr. Imparato, do you have a number on 
that? And I'll be happy to get back to you, but----
    Mr. Imparato. I don't have a--I had another issue I wanted 
to raise that relates to the numbers, but--did you have 
something more directly----
    Dr. Hudson. I just wanted to make the point that, with 
first-trimester screening, while there are more positive 
results than there are actually affected pregnancies, it has 
had the effect of reducing the number of people who have had 
amniocentesis. Because if you get the negative results, which 
is good, back, then there's no reason, even if you have risk 
factors--advanced maternal age, et cetera--there's no reason 
for you to have amniocentesis. So the actual number of 
amniocenteses are growing down as a consequence of the number 
of pre---first-trimester, non-invasive screening tests going 
up. So they have both some plus sides and down sides. But, 
ultimately, the number of amniocenteses is going down.
    Senator Brownback. Mr. Imparato?
    Mr. Imparato. Yes, Senator, I just wanted to share a nuance 
on this question that would be interesting to look at. I don't 
know to what extent the researchers have. If you're talking 
about the context of parents who are expecting their first 
child, I think there's a lot of anxiety associated with the 
first child, and people are going to likely want to have all 
the information they can possibly get, because they feel that's 
part of being a good parent.
    I know when my wife and I had our first son, I was working 
in disability rights. My wife wanted to have the test so she 
could prepare. Second child, 5 years later, she didn't want to 
have the test because, as a parent, she realized that there are 
so many things that happen after the birth, you can't prepare 
for all of it. You roll with the punches as a parent. I mean, I 
think----
    So I think it would be interesting to look at, What do, you 
know, people that have experience as parents opt for, and what 
happens in the context of the first pregnancy? And are people 
with that level of anxiety--relating to some of the other 
witnesses--are they in a really good position to hear that 
information and process it, given the anxiety that they have as 
new parents?
    Senator Brownback. Mr. Kimbrell, I want----
    Mr. Kimbrell. Mr. Chairman, I'd just quickly just jump in 
on that, which is that you mentioned spina bifida a couple of 
times, and I think it's a tremendous example of where genetic 
determinism failed. It was assumed that spina bifida was going 
to be either a monogenetic disease--and they said, ``Well, we 
can't find that, so it's probably a multi-factual disease, a 
lot of genes involved.'' And actually they found it was a 
vitamin deficiency. If the 70 million women who can be pregnant 
in America were given folic acid, this would disappear 
altogether.
    So, again, we--in this genetic determinism, you know, we 
have failed to look at the environmental factors and some of 
the economic factors that create a great many of these 
problems, in focusing on the very small number of diseases that 
actually are monogenetic. And I think it's an excellent of the 
larger reach we should be doing if we really want to protect 
children.
    And, second, you know, we've talked almost solely about 
prenatal diagnosis. We haven't talked about preimplantation 
genetic diagnosis, PGD. And that's positive--that can be both 
positive and negative eugenics, but it also can be used as 
positive eugenics, where we can begin to select for certain 
traits before we have an embryo implanted, in IVF. So it adds a 
whole new element to this, which isn't just the negative 
eugenics of aborting a child, but actually, in the IVF 
circumstance, not going to an IVF center because you're 
infertile, but going there because you want to plan your child. 
A new commercial business in planning your children. And it 
brings up some very unique and, as I said, very important 
questions as to eugenics and commercial eugenics.
    Senator Brownback. Dr. Hudson?
    Dr. Hudson. I'd like to respond to the prior comments. The 
notion that anyone would want to go through in-vitro 
fertilization, which is expensive, painful, and uncomfortable, 
in order to make use of the extraordinarily limited number of 
tests that can be used in that context that are positively 
eugenic strikes me as only applying to an extraordinary rare 
individual.
    The second is that, while my husband and I would love to 
have, perhaps you could imagine, a tall, blonde child, we could 
go through IVF, and there would be not a single embryo there 
that had those characteristics, because you can only pick from 
the characteristics that are present in the parents.
    So I think we need to, sort of, have some realism, along 
with a ``genetics are not destiny,'' in terms of thinking about 
what the possibilities are here, and keep them focused on the 
realistic, serious issues that confront us today, and not get 
too far afield.
    Mr. Kimbrell. Mr. Chairman, I just want to point out that 
in the report that the President's Council on Bioethics 
released, called, ``Reproduction Responsibility,'' they report, 
with several footnotes, that over one-third of those who go 
through this process are not infertile.
    Dr. Hudson. But----
    Mr. Kimbrell. So that's not a very rare individual. And, 
also, it has already been used for sex selection and other non-
disease cases. This is the President's page. I can submit this 
to the Committee for----
    Senator Brownback. We will put it in the record, and I 
appreciate the discussion back and forth on this topic.
    [The information previously referred to is retained in 
Committee files.]
    Senator Brownback. I want to get back to Down's syndrome 
and what we've learned going through this. And there are quotes 
here that are really troubling to me. I think they're really 
troubling to Mr. Imparato, that he would note, and did note.
    There's an article yesterday quoting a Dutch physician. 
This is in a Kansas newspaper. It says, quote--talking about 
the selection of a child--``Babies should be killed whenever 
some physical or mental defect is discovered, before or after 
birth.'' This is a Dutch physician.
    It does seem like we're coming to an age or a point where 
we're going to have the ability to make a whole bunch more 
choices, and we're going to know a whole lot more ahead of 
time. And it does seem like we're trying to hone down into 
just, kind of, who we really want here, or not.
    Dr. Hudson, do you see that in any of your research, where 
you're surveying and you're out, that--aren't you troubled by 
that? And, if so, where would you draw some limits around this, 
if you are troubled by it?
    Dr. Hudson. Well, I think you raised a really good point in 
your opening remark about starting a conversation. Because I 
think to the extent that people are having the conversation and 
thinking deeply about what is it that we want from this 
technology and what kinds of decisions that we want to make, 
that's going to help us all move along in this arena.
    What we learned in our research was that where people draw 
the ethical line is along a very large continuum, and that 
people are anxious about other people making those limits or 
lines for them. And that comes from across the spectrum.
    But there is this sense among a vast majority of Americans 
that there is a role that can be played by the government, in 
terms of safety and accuracy of genetic testing, as I 
mentioned. I think that we need to think long and hard, so that 
when people are in the situation of facing--making a decision 
about what tests to have, that they have as much information 
and as much thinking about it in advance.
    And I'll give you one example. Someone else mentioned CF 
carrier screening is now the medical guidelines of the American 
College of Obstetricians and Gynecologists. But those tests, 
unfortunately, are most often being offered to parents to find 
out the parents' risks of having a child with CF after the 
woman is already pregnant. That doesn't make any sense. We 
should be offering carrier testing and talking about genetics 
before people start having children, and not after.
    So there's a lot that we can be doing to give people an 
opportunity--the worst time to be thinking about these things 
is in that anxious early pregnancy time. We need to think about 
these things ahead of time, collect information, have 
opportunities to find out, What is having cystic fibrosis like? 
What are the health conditions that you face? What kinds of 
medical situations, what kinds of social situations?
    Senator Brownback. Well, you know, Dr. Hudson, what about 
sex selection? Should people be allowed to pick, based on sex 
selection?
    Dr. Hudson. I'm not going to make a comment about whether 
people should or shouldn't. I will say that the most common 
means of determining, prenatally, what the sex of a child is, 
is not through genetic testing, but through sonography or 
ultrasound. So prenatal genetic testing is really, sort of, an 
offshoot. It's not directly relevant.
    Senator Brownback. You're seeing this take place in a 
number of countries, I believe. I've read articles--now, this 
is in an article--that India no longer allows the sonogram 
operator to tell the parents whether the child is male or 
female, because they've had a number of girls--you know, baby 
girls aborted. We're seeing some of this taking place in China. 
That's happening, and it has had an impact of skewing the 
population ratios of male to female within that society.
    Dr. Hudson. There's also----
    Senator Brownback. So, I mean, this is a very practical 
issue that's being expressed in many places around the world.
    Dr. Hudson. In this country, there's also technology prior 
to conception in which you can pick the sex of your offspring--
called microsort--in which the sperm are separated based on 
whether or not they carry a Y chromosome, which would produce a 
male, or an X chromosome that would produce a female. And in 
this country--and we live in a unique culture, quite distinct 
from that in India or China--there is no preference toward 
males or females in the selection of which sperm to use in 
order to create a child. There are all sorts of other issues 
there, but a sex imbalance is not one of them.
    Senator Brownback. Where are we headed with this, as a 
practitioner? Dr. Bruchalski, I'd be interested in your and Dr. 
Chicoine's view on, Where are we headed, as a practitioner, in 
this field? Are you going to--now and in the future, are you 
going to have more tests that parents are going to be able to 
have ahead of time? They're going to be in your office, I 
presume, asking for these tests. They're going to know about, 
apparently, maybe factors--I don't know that they're going to 
know about obesity factors, but they're going to know about, 
perhaps, potential for certain types of cancer. What do you see 
as this thing--as this develops, moving on down the road?
    Dr. Bruchalski. As a clinician, I can tell that, over the 
last 15 years, we have moved from Down's syndrome to tubal 
issues to cystic-fibrosis-carrier issues; and more and more, as 
we've been hearing today, have been coming to light.
    What I'm afraid of is that our hands, right now, are 
being--I don't want to say ``tied,'' but, to a sense, they are 
being tied to people who are getting on the Internet for 
information, where the data is out there, but it's unclear as 
to what understanding couples, as well as physicians, have on 
this. And we--when they talk about nondirective counseling, 
it's very difficult, at least from what my patients tell us, to 
have true nondirectional counseling. And I believe that that 
has been--because we are all called--as you asked Dr. Hudson 
about sex selection--we are all called to make judgments on 
this technology. And in the room, when you close that door and 
you begin to talk to parents, you're trying to take data that's 
statistical and apply it to their child, to their families.
    And I'm very, very cautious as to what the future holds in 
regard to this, because we have already gone to preimplantation 
genetics. That's already happening. The production 
endocrinologists is where that's occurring. I'm a private 
practice, bread-and-butter OB/GYN in Northern Virginia, and 
what we're finding here is that we have to take incredible 
amounts of statistics, and translate that for parents, and make 
sure that they are fully aware of what choices they're making 
for their child and for their family--not just their immediate, 
but for their general family--because of these genetic issues.
    It's hard for me to imagine what the future holds, because, 
over the last 15 years, we've made--we've now been pushed to 
cystic-fibrosis screening before it has come fully--before it 
has become fully accurate. And I think the data from statistics 
of risk to the actual disease, it's impossible to get. You 
can't translate that for the parent. And so nondirective 
counseling becomes ``you do your best.'' And I think it's a 
noble and an honorable attempt, but I think it becomes harder 
and harder, because the questions become more challenging.
    Senator Brownback. Dr. Chicoine?
    Dr. Chicoine. I guess the concern I have is that so much of 
the focus now has gone on to the prenatal testing and the 
prenatal diagnosis that my question is, Are we going to lose 
the people that are already here? And are we going to lose the 
people that will still be born in the future, as well? Are we 
not going to be able to provide for them, because so much of 
the commerce and the economics is going in that direction, in 
not providing care for these people after they're born?
    I guess the other question I have is--you mentioned, in 
your first statements, about just some of the things that 
you've learned from being around a person with Down's syndrome, 
and I think there are many things like that, that--and that's 
just one disability--many things we can learn from people. And 
you mentioned social things. But I think there are a lot of 
very scientific things that we have not taken the time to 
learn, as well. Why, out of more than 2,500 patients with 
Down's syndrome that I've seen, has one had a heart attack? 
Whatever it is that has--about people with Down's syndrome that 
prevents them from having a heart attack, I want.
    [Laughter.]
    Dr. Chicoine. Why is it that we see almost no high blood 
pressure? I want some of that, too. You know, why do we see 
very little asthma? A number of conditions.
    So I think there are a number of things about--you know, 
we--it's very interesting that we--that so much focus of 
genetics is now to limit genetic diversity, which we have been 
taught for hundreds of years--at least a hundred years--that 
that is the deal. Genetic diversity is what keeps us going. If 
we limit genetic diversity, we're going to lose ourselves as a 
species. We're going to--and that's how species get lost, 
because they don't have genetic diversity. And that, to me, I 
think, from a--I think it puts, right here in this arena, 
science--I think, to me, that's a very important piece that has 
been totally overlooked with regards to at least certain people 
with Down's syndrome. And I think that to--and I think 
certainly it's a social issue, as well, caring for them, caring 
for the people that are here. I think if you look at the number 
of studies--you know, I--just pull up Down's syndrome in the 
literature--the great majority talks about prenatal care, and 
very little about actually caring for the people that are here, 
and I think that's a mistake.
    Senator Brownback. This has been very informative.
    Mr. Kimbrell, a final thought?
    Mr. Kimbrell. Yes. I think we do need to look also where 
we're going with this. You know, if you look, over the least 
couple of decades, and the ``progress''--well, I'll put that in 
quotes--that has been made, there are things in the future that 
we're already looking at. For example, we saying, What about 
genetically engineering children to free them of certain 
diseases, certain characteristics, permanently changing their 
germ line? We already have the first one of these proposals 
before the NIH. And what about cloning embryos, cloning healthy 
embryos for infertility or for study? And it seems to me this 
is the next line. Right now, we're diagnosing. Now we're at the 
preimplantation phase. What about creating the genetic 
engineering? So----
    Senator Brownback. It might be to save your children. I've 
been reading about some, too, where you have a--save your 
sibling, where you try to get a genetic match for a child 
that's older.
    Mr. Kimbrell. Right. That's already happening, to a certain 
extent. But it seems to me, as far as policy recommendations, 
for goodness sakes, why can't we pass a ban on the germ line, 
genetic engineering of human beings? Why can't we pass a ban on 
the cloning of human beings and human embryos? Why can't we 
pass a ban at least on the patenting and the commercial 
patenting of human embryos and human life forms? It seems to me 
at least we can do that to stop any next phase that might be 
coming in while we begin this public debate that, in many ways, 
we started this discussion here today.
    And, additionally, I do not think we--many states have 
prohibited surrogate motherhood, and there has been 
constitutional challenges to that have failed. You do not have 
a reproductive right to buy a child. And it seems to me that 
reproductive--this has zero to do with destroying a child, 
which is still happening in this country with many of the 
ethnic communities in this country--I've cited it in my book--
many places where we literally are killing female embryos 
because they're female. I don't--as a society, we need to 
discuss whether we want to make sure that doesn't happen.
    So I think--in many of these eugenic areas, I think 
legislation is appropriate. And I would hate to--I hate to 
think back over a hundred year history where we failed to take 
that action with sterilization, and, all these years later, 
would fail again to save those children--who would be the 
victims of sex selection or because they were supposedly 
disposed to obesity--to save those children, again, I think 
would be a tragic error.
    Senator Brownback. Thank you all very much for joining us. 
The longer I've been around, the more I recognize that each and 
every person is unique and beautiful, no matter what their 
nature, no matter what they look like, no matter, really, 
anything. They're just--they're unique, they're beautiful, 
they're precious, they're a child. They're a beautiful gift 
from God. And I think we're the poorer when we don't welcome 
them in as much as we possibly can.
    And it's also striking to me that, of societies, it is a 
big measure--what we do for the so-called ``least'' is a real 
key measure of what the health and welfare of a society is. And 
so we're really wrestling with fundamental questions on this 
one right here. I don't want to see us get to a point where we 
do lose diversity, because--out of some strange notion that 
we've got to have a perfect set here. And you see this 
happening, I think, in some other countries, you know, where 
you read about India, China--and Israel; I was visiting there, 
and they talk about Down's syndrome being a religious 
phenomena, that it happens mostly with very observant Jewish 
people, and not with others. And you want to know what impact 
does that have on a society, if that's the nature?
    I do think this is appropriate for us to discuss. I think 
we really need to have a big discussion about it, as a nation, 
and not be scared of its implications in the overall abortion 
debate, but, rather, have a good discussion on it about what it 
means. Because we are upon the science right now. It is on us, 
and we need to have that good discussion.
    I appreciate you opening up the debate about it. I look 
forward to working with each of you as we try to craft 
appropriate responses to it. And I'm sure we'll be talking more 
about this.
    Thank you very much for coming. The hearing's adjourned.
    [Whereupon, at 3:40 p.m., the hearing was adjourned.]

                            A P P E N D I X

            Prepared Statement of Hon. Frank R. Lautenberg, 
                      U.S. Senator from New Jersey

    Mr. Chairman:

    Concern for children is obviously an important thing. I have four 
children and ten grandchildren. When I cast a vote in this Committee or 
on the Senate floor, I think about the effect that vote will have on 
them.
    So I share your concern about children. But this hearing isn't 
really about children. It's another attempt to advance an anti-choice 
agenda. That's not the role of this Subcommittee.
    I've reviewed the hearings this Subcommittee has held during the 
108th Congress.
    This Subcommittee has jurisdiction over a number of issues. We've 
had 14 hearings on NASA and a sprinkling of hearings on some other 
relevant topics.
    I object to the 11 hearings on issues that are beyond this 
Subcommittee's jurisdiction. Hearings on divorce, abortion, and stem 
cell research are thinly-veiled attempts to push anti-abortion views.
    It's telling that the panels are always loaded with anti-choice 
witnesses to prevent a fair debate about some of very serious topics.
    These 11 hearings promote a certain set of cultural values. Don't 
misunderstand me: I have no problem with holding those values, or 
voting in a way that is consistent with them. That is your right.
    But I do object to hijacking this Subcommittee, at taxpayer 
expense, to push an agenda that properly falls under the purview of the 
Judiciary and HELP Committees.
    If this Subcommittee is going to be used in this fashion, then I 
propose that we hold hearings and get social scientists here to testify 
on the impacts that long-term joblessness has on families. We can hold 
hearings to determine whether not fully funding post-natal care, Head 
Start, and No Child Left Behind is detrimental to children.
    Thank you, Mr. Chairman.

             Subcommittee on Science, Technology, and Space
                     Hearings in the 108th Congress
------------------------------------------------------------------------
           Subcommittee Jurisdiction                Number of Hearings
------------------------------------------------------------------------
National Aeronautic and Space Administration                          14
National Oceanic and Atmospheric Administration                        1
National Science Foundation                                            0
National Institute of Standards and Technology                         0
Office of Science and Technology Policy                                1
U.S. Fire Administration                                               0
Federal R&D Funding                                                    1
Internet                                                               0
Earthquake Research Programs                                           1
Encryption Technology                                                  0
International Science and Technology                                   1
------------------------------------------------------------------------
TOTAL                                                                 19
------------------------------------------------------------------------



------------------------------------------------------------------------
              Extra Jurisdictional                  Number of Hearings
------------------------------------------------------------------------
Anti Abortion Agenda                                                   7
Media Indecency & Violence                                             2
Marriage Promotion                                                     1
Science Behind Pornography Addiction                                   1
A New Kind of Science                                                  1
------------------------------------------------------------------------
TOTAL                                                                 12
------------------------------------------------------------------------

    Written Questions Submitted by Hon. Frank R. Lautenberg to the 
                               Witnesses

For Andrew Kimbrell
    Background. Andrew Kimbrell is the Director for the International 
Center for Technology Assessment (CTA). CTA is a non-profit that takes 
a negative and generally skeptical view of technology. Kimbrell writes 
that technology is ``among the most powerful, and often destructive, 
agents of social change in modern times.''

    Question. Do you agree that there are situations where genetic 
testing can be positive, such as in families where there is a high risk 
for a certain disease? Wouldn't a negative test for a birth defect--
especially one that is strongly predictive--provide an enormous sense 
of relief for the expecting parents?

For John Bruchalski
    Background. Dr. John Bruchalski is the director of the Tepeyac 
Family Center in Fairfax, Virginia, an obstetrical and gynecological 
facility that ``combines the best of modern medicine with the healing 
presence of Jesus Christ under the medical-moral guidance of the 
Catholic Church.''
    He states in his testimony that the data used for prenatal testing 
is ``more confusing than clarifying and . . . that the conversation 
generated may cause irreparable damage in the parent child bond with 
implications of how that family views individuals with disabilities, or 
worse, how they view those who have had `abnormal testing' but are 
completely normal human beings.''

    Question 1. It sounds to me like you are suggesting that prenatal 
genetic testing should not be done--is that your view? Shouldn't this 
be a decision that a woman makes with her doctor and not one that 
politicians make for her?
    Background. Dr. Bruchalski has affiliations with the ``Couple to 
Couple'' league, and the ``Family of the Americas,'' both organizations 
that oppose the use of any form of birth control. In addition,he is a 
board member for the Abortion Breast Cancer Link (ABC) that suggests 
there is a link between abortion and incidence of breast cancer. Such a 
correlation is false.
    ABC's web page states:

        It cannot be said that all women who have breast cancer have 
        had abortions. Similarly, not all women who have had abortions 
        will get breast cancer. Nevertheless, abortion is the most 
        preventable risk factor for breast cancer.

    Question 2. Dr. Burchalski you are on the board of a group that has 
tried to line abortion and breast cancer. In light of the fact that the 
National Cancer Institute (NCI) contends there is no association 
between abortion and breast cancer, why do you continue to insist that 
such a link exists?

For Brian Chicoine, M.D.
    Background. Dr. Brian Chicoine is the Medical Director of the 
center and on the Family Practice faculty at Lutheran General Hospital. 
Dr. Chicoine specializes in the area of adult Down Syndrome and has 
been with the center since its inception in 1992. Brownback has called 
Dr. Chicoine in to try to appeal to the disability community.

    Question. Many prenatal tests can identify genetic disabilities 
such as Down Syndrome midway through pregnancy. In your work have you 
been able to use this knowledge in a positive way? For example, can you 
work with expecting mothers to educate and train them on how to 
effectively raise their child or put them in touch with parents that 
have developmentally disabled child to help them cope with some of the 
challenges that lie ahead?

For Kathy Hudson
    Background. Kathy Hudson is the witness called to testify by the 
Democratic side. She should be friendly to our point of view.
    Genetic tests provide information that can provide a diagnosis and 
guide treatment decisions, prognostic information that can help tell 
the course of a disease, or probabilistic predictive information about 
the future risk of disease. Some the birth defects that can be detected 
by prenatal diagnostic tests include: cystic fibrosis, sickle cell 
disease or Tay-Sachs disease; Muscular Dystrophy; Down Syndrome; and 
certain birth defects, such as spina bifida.

    Question. Isn't it is unfair to layer guilt and shame on 
individuals honestly trying to make decisions that are based on the 
quality of life for the individual and the family--after all these 
decisions are not simple or entered into lightly?

                                  
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