[Congressional Record (Bound Edition), Volume 151 (2005), Part 4]
[Senate]
[Pages 5277-5278]
[From the U.S. Government Publishing Office, www.gpo.gov]




           THE PRENATALLY DIAGNOSED CONDITIONS AWARENESS ACT

  Mr. BROWNBACK. Mr. President, I recently introduced S. 609, the 
Prenatally-diagnosed Conditions Awareness Act, with my colleague, the 
senior Senator from Massachusetts. This bill will accomplish the 
following:
  One, ensure that pregnant women facing a positive prenatal test 
result will be more likely to receive up-to-date, scientific 
information about the life expectancy, clinical course, intellectual 
and functional development, and prenatal and postnatal treatment 
options for their child;
  Two, provide pregnant women referrals to support services such as 
hotlines, Web sites, information clearinghouses, registries of families 
willing to adopt babies with disabilities, and parent-to-parent 
programs where people with children with disabilities meet with the 
newly diagnosed family to provide support and real-world information;
  Three, improve epidemiologic understanding of prenatally-diagnosed 
conditions, within a strict set of confidentiality protections;

[[Page 5278]]

  Four, support health care providers who perform prenatal tests and 
deliver results; and
  Five, authorize a study of the effectiveness of existing health care 
and family support services for children with disabilities and their 
families.
  The need for this legislation and the public dialogue I hope it 
encourages could not be more urgent. Medical science has provided the 
opportunity to obtain a massive amount of information about our own 
bodies and health and that of our children. But I am concerned that our 
ethical dialogue has not kept pace with new ethical challenges. We have 
been able to screen for certain conditions in the womb for quite some 
time now, but I am concerned that we don't have a great track record 
for handling that information very well. For some conditions that can 
be detected in the womb, such as Down Syndrome, we are aborting 80 
percent or more of the babies who test positive. The effect of this 
sort of ``weeding out'' represents a sort of new eugenics, a form of 
systematic, disability-based discrimination.
  Worse, trends suggest that this atrocity doesn't just end in the 
womb. The Netherlands has recently enacted policies that make it 
acceptable for doctors to end the lives of terminally ill children up 
to age 12, resulting in about 100 cases of pediatrician-induced 
homicides of children with severe handicaps each year. Belgium is 
considering similar policies. Unfortunately, these policies are 
starting to trickle into our own country. In Texas, a court recently 
upheld a hospital's decision to remove life support from a 6-month-old 
handicapped baby, against his mother's wishes.
  It sounds too crazy to be true, but it is not just fringe thinking--
leading so-called ethics experts have supported the killing of children 
with disabilities, such as Princeton Professor Peter Singer, who wrote 
in 1993 in his book Practical Ethics, ``killing a defective infant is 
not morally equivalent to killing a person . . . sometimes it is not 
wrong at all.'' These ideas echo back to Nazi Germany, and, 
unfortunately, there is a tragic history, even in our own country, of 
abuse of institutionalized people with disabilities, only a few decades 
ago. Once one goes down the path of valuing some lives more than 
others, of saying that people with disabilities don't have the same 
dignity and right to live as others, there are very few means that 
don't justify the so-called ``worthy end'' of a disability-free 
society.
  When I see beautiful children with Down Syndrome, spina bifida and 
other differences, I can't imagine why our society would ever condone 
this sort of unnatural selection. We don't want a world where parents 
feel driven to justify their children's existence. In addition to the 
many abilities that people with disabilities have which are equivalent 
to others, these individuals so often have a perspective the rest of us 
don't have. We learn compassion, heroism, humility, courage and self-
sacrifice from these special individuals, and their gift to us is to 
inspire us, by their example, to achieve these virtues ourselves.
  Published surveys suggest that our legislation is desperately needed. 
A survey of 499 primary care physicians delivering a prenatal diagnosis 
of Down Syndrome to expectant parents found that 10 percent actively 
``urged'' parents to terminate the pregnancies, and 13 percent 
indicated that they ``emphasized the negative aspects of Down Syndrome 
so that parents would favor a termination.''
  This bill offers support to ensure that prenatal testing need not be 
a negative experience for those whose children are diagnosed with a 
condition like Down Syndrome. For instance, some pregnant women might 
choose to carry their child to term if they knew there were waiting 
lists of families willing to adopt children with Down Syndrome. Some 
parents might be reassured about keeping their children if they were 
able to spend some time talking with a family that has a special needs 
child about their real-life experience. Some parents would be helped by 
hearing a positive message about the potential and joy of living with 
children with disabilities, while also being presented with a realistic 
assessment of the challenges.
  There are many people to thank for helping prepare this bill for 
introduction, and I hope they will continue to help us as we move this 
bill towards the President's desk. In particular, I am honored to have 
my friend the senior Senator from Massachusetts as a lead Democrat on 
this bill. Senator Kennedy is an incredible champion for people with 
disabilities. As we have worked together, he has educated me about some 
of the challenges faced by families with children with disabilities. In 
particular, I want to thank Connie Garner on Senator Kennedy's staff, 
whose tireless advocacy for the dignity and rights of people with 
disabilities has been an inspiration to me and my staff.
  Many thanks to our partners in the House of Representatives, who I 
hope will speedily pass the companion version of this bill, especially 
lead sponsor Chairman Sensenbrenner. Key House support has also come 
from my friend Congressman Pete Sessions and Congressman John 
Hostettler.
  I urge my colleagues to co-sponsor this legislation and I look 
forward to working with my colleague from Wyoming, the Chairman of the 
Committee on Health, Education, Labor and Pensions, and the majority 
leader, to speed Senate passage of this important legislation.

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