- Prenatal Testing and Disability: A Truce in the Culture Wars?
In politics and policy-making, many speakers claim a commitment to finding common ground with their adversaries, but in the end, partisanship tends to trump the collaborative commitment. In a rare exception, however, pro-choice, pro-life, and disability advocates joined to support a 2008 federal law called the Prenatally and Postnatally Diagnosed Awareness Act.1
In an unusual alliance, Kansas Republican Senator Sam Brownback and Massachusetts Democratic Senator Edward Kennedy cosponsored the bill that led to the legislation. In last fall’s presidential campaign, both Barack Obama and John McCain endorsed the bill. A surprising array of organizations—including the National Women’s Health Network, the Disability Rights and Education Fund, and the Christian Coalition—applauded its passage. Much of the Brownback-Kennedy bill’s success can be explained by its focus on information disclosure.
The Law and Its Aims
The law seeks to improve the quality of information that pregnant women and new parents receive about children with disabilities. The law names Down syndrome as a particular concern, but it also covers “any health condition” diagnosed during the prenatal period or up to one year after a child’s birth. It authorizes the U.S. Secretary of Health and Human Services to award grants to and collaborate with states and expert groups, including disability organizations, with the aim of producing and distributing information about prenatally and postnatally diagnosed conditions. That information should include timely and factually accurate descriptions of “the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes.” It should also include links to information hotlines, resource centers, support groups, and other organizations serving the relevant populations. The law encourages the secretary to fund cooperative projects involving disability advocacy groups and organizations of health professionals.
Brownback-Kennedy arrives at a time when prenatal testing is on the rise. In 2007, the American College of Obstetricians and Gynecologists (ACOG) recommended that prenatal screening and testing be offered to all pregnant women, regardless of age.2 With this recommendation, more women will undergo screening and testing, and more will receive a prenatal diagnosis. Now more than ever, it is essential that prospective parents be given accurate and balanced information about what a diagnosis could mean to them and their child.
Brownback-Kennedy responds to evidence that women and their partners often fail to receive up-to-date information about the capabilities and experiences of people with conditions like Down syndrome and spina bifida, and about the services available to assist children and their families. Critics say that genetic counselors and obstetricians at times convey unjustifiably negative attitudes about life with a disability.3 Critics also think clinicians’ negative attitudes about Down syndrome could be a factor in the estimated 85–90 percent abortion rate among women whose fetuses are diagnosed with the condition.4 Although ACOG recommends that physicians refer women to advocacy groups—such as The National Down Syndrome Society and National Down Syndrome Congress—and to local support groups, many patients report not receiving this information. In one survey of women who continued their pregnancies after a prenatal diagnosis of Down syndrome, most said their obstetricians failed to provide sufficient up-to-date material about the condition or contact information for organizations that could put them in touch with parents raising children with Down syndrome.5
The expanding ability to detect prenatal genetic variations also raises separate concerns about the accuracy of some prenatal diagnoses. With a new technique called microarray comparative genome hybridization, scientists can analyze fetal DNA to identify at least twice as many harmful variations as are identified by the customary prenatal tests. At this point, however, the clinical impact of many variants is uncertain. Thus, prospective parents might decide to terminate a pregnancy based on an inaccurate picture of future health risks to a child.6 Brownback-Kennedy seeks to ensure that prospective parents receive information about the accuracy of all prenatal diagnostic tests.
Information and Abortion
The law’s goal of promoting better information about prenatally diagnosed conditions is compatible with the pro-choice position. Rather than attempting [End Page 7...