Earlier this month, Congress passed and the President signed into law the Prenatally and Postnatally Diagnosed Conditions Awareness Act, a bill “to amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.”
The act focuses on increasing knowledge and resources, articulating the following purposes:
- increase patient referrals to providers of key support services for women who have received a positive diagnosis for Down syndrome, or other prenatally or postnatally diagnosed conditions, as well as to provide up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes;
- strengthen existing networks of support through the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and other patient and provider outreach programs; and
- ensure that patients receive up-to-date, evidence-based information about the accuracy of the test.
Services authorized by the act may include a telephone hotline for those seeking support with regards to diagnoses, creation of a registry of those willing to adopt children with diagnoses such as Down syndrome, further education of health care providers on the issues, and expansion of other support programs.
A joint response issued by the Disability Rights Education and Defense Fund, Generations Ahead, National Women’s Health Network, Reproductive Health Technologies Project, and World Institute on Disability called the law “a positive step toward providing better information and support to pregnant women and new mothers whose fetus or newborn is diagnosed with a disability.”
The organizations also note that “With Democratic Senator Edward Kennedy as an original co-sponsor, the Act does not include anti-choice language nor restrict the ability to obtain an abortion, even though it was authored by Kansas Republican Senator Brownback, a staunch opponent of abortion.”
For further reading on this issue, our OBOS web content provides additional discussion of the politics of prenatal testing and disability rights.