Brownback, Kennedy collaborating on Down syndrome bill
December 3rd, 2007AP story in the Boston Globe; WPRI-TV in Providence, Rhode Island; the [Newton] Kansan;
Sens. Sam Brownback, R-Kan., and Edward Kennedy, D-Mass., lawmakers with diametrically opposite views on abortion,
… are teaming up on a bill that could lead to fewer women terminating their pregnancies after getting a diagnosis of Down syndrome.
The bill would require doctors to give more information to parents when a fetus tests positive for Down syndrome about the quality of life for children who have the genetic disorder and referrals to support groups.
Brownback sees the bill as a way to promote his anti-abortion philosophy. But Kennedy says it’s just about helping women make an informed decision.
Up to 90% of women who learn they are carrying a fetus with Down syndrome decide not to have the child.
… The bill is a response to some reports that health professionals often focus only on the most negative aspects of Down syndrome when they counsel patients, ignoring the potential for people with Down syndrome to lead positive, independent lives.
… Kennedy, a prominent champion of abortion rights, does not mention abortion in his support of the bill, and it does not appear to trouble abortion-rights groups.
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December 3rd, 2007 at 9:44 pm
Thanks Patricia for posting this. I see this bill as the common ground for those who are pro-life and those who are pro-choice. This bill is PRO-INFORMATION, and there is a great need for it. I have seen numerous examples of doctors giving little or no information, or worse yet inaccurate information and/or pressure to newly diagnosed parents in a difficult situation. And the research shows that doctors as a whole are not handling the diagnosis of Down syndrome very well.
Even my wonderful and supportive doctors gave me no information on Down syndrome, and offered me a termination 4 times after I had indicated I would continue with the pregnancy regardless of the results. Although they gave me excellent prenatal care and a joyous birth experience, I could have used a pamphlet, a link to a national organization, and an absolute acceptance of my decision without the reminders.
With the increasing sophistication of prenatal testing, there will be fewer people with Down syndrome. But those who join our ranks in the future will be be made up of a greater percentage of those with a prenatal diagnosis. A poorly handled diagnosis delivery can increase feelings of isolation, self-consciousness, resentment, grief, and anger. Many of us are interested in protecting these parents. If perinatologists, OBs, and genetic counselors are going to be the gate keepers of this information, they need to deliver it responsibly, with accurate sources for information, access to experienced parents if they wish, and true neutrality.