All Paren't Should Read About This Bill

Congress OKs Kennedy-Brownback disability diagnosis bill

September 25th, 2008

The House has joined the Senate in passing a measure that disability rights advocates hope will fundamentally change the conversations that are taking place between pregnant American women and their doctors. Passed on a voice vote on Thursday, the bill would provide for accurate, up-to-date information and support for parents who receive a diagnosis of Down syndrome or other disabilities such as spina bifida or cystic fibrosis either prenatally or up to a year after the birth of their child. President Bush is expected to sign it.

Passage of the measure marks the culmination of an unprecedented bipartisan effort that has joined supporters of abortion rights, led by co-sponsor Sen. Edward M. Kennedy (D-Mass.), with opponents of abortion, led by co-sponsor Sen. Sam Brownback, and disability rights advocacy groups. Kennedy is also a longtime advocate for people with disabilities. While members of this loose coalition may have profound disagreements about what may be acceptable at the end of a pregnancy, they came together around another key question in prenatal care: What kind of information and support should be available to pregnant women if initial testing reveals the presence of a disability?

The question has become more urgent in recent years as more women are postponing childbearing, putting them at a greater risk of having pregnancies marked by genetic and other abnormalities, and as the offer of prenatal testing has become standard care. It is estimated that more than 1,000 prenatal tests are available or in development. Included among them are tests for conditions that are not life-threatening, could be helped by surgery or medical care, or don’t appear until adulthood. The prognoses for people with some prenatally diagnosable disabilities have been improving markedly in recent years, leaving medical professionals scrambling to keep up with changing data.

Down syndrome has led the way in the public conversation about prenatal testing and selective abortion because tests to detect the condition were among the first to be developed, and came into use at about the same time the landmark Roe v. Wade case opened the doors to legal abortion in 1973. Yet medical, social and educational changes have dramatically improved the prospects for people with Down syndrome over the same time period.

The Prenatally and Postnatally Diagnosed Conditions Awareness Act is framed as a bill to strengthen the informed consent process around prenatal testing. It provides for families to receive scientifically sound information about the nature of the condition involved, as well as to help them make connections with support services, websites, hotlines and parent networks. The bill also provides for the development of a national clearinghouse of information for parents of children with disabilities, expansion of peer-support programs, the development of a national registry of families wishing to adopt children with disabilities, and education programs for health care providers who give parents the results of prenatal tests. The measure has a price tag of $25 million over five years.

Speaking on the House floor, Rep. Cathy McMorris Rodgers (R-Washington) described herself as the “proud mother of an amazing baby boy,” one-year-old Cole who has Down syndrome. She portrayed the bill as a disability advocacy measure, calling it “a positive step forward in helping new and expecting parents of children with special needs get accurate information on the real potential of their children.” McMorris Rodgers cited a study by pollster Louis Harris and Associates that found that medical professionals are more likely than any other group to underestimate the quality of life experienced by people with disabilities. In an interview after the vote, McMorris Rodgers said she and her husband Brian received Cole’s Down syndrome diagnosis from a medical team that reviewed a long list of “what might go wrong” with her son, but neglected to acknowledge his possibilities. “There’s so much potential that a child with Down syndrome has,” she said, “and we really fail to articulate that side.”

Opponents of abortion have painted the measure as a pro-life bill. In floor testimony, Rep. Tim Ryan (D-Ohio) said it would reduce abortions by telling prospective parents of children with disabilities that “society will be there to support you. We will bring every resource to bear to ensure that you are able to raise a beautiful baby. Never should a pregnant woman feel that her options are limited by a lack of public support for the types of social services that could help her, her family or her baby.” With current statistics saying that 90 percent of pregnancies with a diagnosis of Down syndrome are aborted, Ryan said that number could be reduced if women were given the support they need and deserve.

Sen. Brownback was even more pointed in remarks in support of the bill on the Senate floor last week. “What we’re trying to do with this bill is to see that more Down syndrome children make it here and get here,” he said, standing in front of a large photograph of Republican vice presidential candidate Sarah Palin and her son Trig, who has Down syndrome. “We’re ready to move forward on this so we can get more of these special kids here.”

Approval of the bill came more than three years after an earlier version was introduced, spurred in part by research that found mothers of children with Down syndrome were sharply critical of the paucity of information they were receiving about their child’s diagnosis from medical professionals. A study by Dr. Brian Skotko in the American Journal of Obstetrics and Gynecology said mothers who received a prenatal diagnosis said obstetricians and genetic counselors gave them scant information that was often out of date and unduly pessimistic. Another study in the journal Pediatrics, also by Dr. Skotko, found similar results among women who had received the diagnosis after their children were born.

It is currently estimated that some 400,000 Americans have Down syndrome, a genetic condition that causes a range of physical and intellectual disabilities. The range and extent of impairment can’t be accurately predicted prenatally. While the bill has been making its way through Congress, the development of prenatal tests has been causing excitement among investors who say the market for accurate testing tools has multi-billion dollar potential. Just this week, the stock of California-based Sequenom Inc. has jumped more than 30 percent on an announcement that it had conducted a successful study of a new prenatal test. Sequenom reported that its SEQureDx test detected Down syndrome accurately in the first and second trimester of pregnancy in about 200 samples with no false positives or false negatives, matching earlier data from another 200 samples.

Until a few years ago, prenatal testing was routinely offered only to women aged 35 and over because it was thought that at that age a woman’s risk of having a child with Down syndrome was roughly equal to her risk of having a miscarriage caused by a prenatal test. Recently, however, the American College of Obstetricians and Gynecologists (ACOG) has issued new recommendations that all pregnant women regardless of age be offered prenatal screening and testing.

Not specifically addressed by this bill is the question of how doctors are themselves being educated about the conditions they may discover through prenatal diagnosis. A recent study published in the American Journal of Obstetrics and Gynecology found that 45 percent of obstetricians and gynecologists rated their residency training regarding prenatal diagnosis to be “barely adequate” or “nonexistent.” Another study, this one conducted by Special Olympics, found that 81 percent of medical school students said they were not getting any clinical training regarding individuals with intellectual disabilities.

An earlier version of the measure, which attempted to establish requirements for doctors to provide accurate information about disabilities to their patients and set penalties for those who failed to comply, met with opposition from medical professionals. There were concerns that political pressures might intrude upon the doctor-patient relationship.

Congressional offices reported getting a flurry of last-minute phone calls from disability advocates organized by groups including the National Down Syndrome Society, National Down Syndrome Congress, Trisomy 18 Foundation and the University Centers for Excellence in Developmental Disabilities.

For Madeleine Will, director of the Policy Center of the National Down Syndrome Society, the bill’s passage marked an emotional moment. “I am thrilled beyond measure,” she said, adding that she hoped it will prompt a shift in the way the nation regards people with disabilities.

“Through providing accurate, updated information about disabilities like Down syndrome to pregnant women, the hope is that they will make a better, more informed decision,” she said. “But the bigger impact will be better understanding on the part of the American people about the nature of disability and the value of these citizens to their families, their communities and to our country.”

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