Measure Would Require Doctors To Provide Updated Information To New And
Would-Be Parents Of Children With Down Syndrome
By Dave Reynolds, Inclusion Daily Express
May 23, 2005

WASHINGTON, DC--Under a bipartisan measure introduced in the U.S.
Senate, doctors would need to give expectant parents up-to-date
information on Down syndrome and other congenital disabilities before
asking whether they want to terminate their pregnancies. 

A recent survey of nearly 3,000 parents of children with Down syndrome
revealed that in a majority of cases doctors who diagnosed their fetuses
with the condition focused on the negative aspects of raising such a
child and presented out-dated stereotypes, while ignoring the positive
aspects. This is believed to be a primary reason why 80 percent of women
who learn of such a diagnosis choose an abortion. 

"In many cases the doctors were insensitive or just plain rude," said
the study's author, Brian Skotko, whose 24-year-old sister has Down
syndrome. 

Senator Sam Brownback, (R-Kansas) and Edward Kennedy (D-Massachusetts)
introduced the "Brownback-Kennedy Prenatally Diagnosed Condition
Awareness Act" in mid-March. The bill would allocate $25 million to
provide would-be parents with more up-to-date, scientific information
about such things as life expectancy, along with how to contact support
groups and current parents of children with Down syndrome, spina bifida,
cystic fibrosis, and other congenital conditions. 

The legislation outlined below speaks specifically to Down syndrome, as
it is one of the more commonly detected genetic disabilities, but there
are many other disabilities that are detectable before birth that could
be included.  CP isn't often one of these disabilities, but if a more
positive approach were taken with disabilities like Down syndrome, new
parents might be less terrified to find out their child had CP.  I was
born with hydrocephalus, which caused my CP, and my parents were given
the option of not treating my hydrocephalus, and "letting nature take
its course," which would have resulted in either profound cognitive
disabilities or death.  Now that hydrocephalus is frequently diagnosed
in utero, and one of the more common outcomes is CP, parents should be
told that neither condition is an automatic death sentence, or will
invariably lead to cognitive deficits.

Kendall Corbett

 

An unreasonable man (but my wife says that's redundant!)

 

The reasonable man adapts himself to the world; the unreasonable one
persists in trying to adapt the world to himself. Therefore, all
progress depends on the unreasonable man.

 

-George Bernard Shaw 1856-1950

 

 

 

"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,"
Andrew Imparato, president of the American Association of People With
Disabilities, told a congressional committee last fall. "Doctors may
want to avoid a complicated delivery, and insurers may want to avoid
expenses associated with the child's disability."

[Editor's note: The Lawrence Journal-World notes that Senator Edward
Kennedy "has a sister with Down syndrome". Rose Marie Kennedy, who died
in January at age 86, was believed to have had mild mental retardation
before undergoing a prefrontal lobotomy in 1941. By all public accounts
of which I am aware, she did not have Down syndrome.]

Related:
"Down syndrome counseling prompts bill calling for more positive
support" (Lawrence Journal-World)
http://www2.ljworld.com/news/2005/may/16/down_syndrome_counseling
<http://www2.ljworld.com/news/2005/may/16/down_syndrome_counseling/> 
"Parents cite callousness in diagnoses for Down" (Washington Post via
Fort Wayne Journal Gazette)
http://www.fortwayne.com/mld/journalgazette/living/11653954.htm
"Prenatally diagnosed Down syndrome: Mothers who continued their
pregnancies evaluate their health care providers" (American Journal of
Obstetrics and Gynecology)
http://media.ljworld.com/pdf/2005/05/16/prenatal1.pdf
S. 609 Brownback-Kennedy Prenatally Diagnosed Conditions Awareness Act
http://media.ljworld.com/pdf/2005/05/16/prenatal2.pdf

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