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 diagnosed conditions.
Prenatally Diagnosed Condition Awareness Act - Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally diagnosed conditions, including the awarding of grants, contracts or cooperative agreements to: (1) collect, synthesize, and disseminate current scientific information; and (2) coordinate the provision of, and access to, supportive services for patients affected, which shall include a telephone hotline, an information clearinghouse, peer-support programs, and registries of families willing to adopt children affected by such conditions.
Requires the Secretary, acting through the Director of CDC, to provide assistance to State and local heath departments to integrate the results of prenatal testing into State-based vital statistics and birth defects surveillance programs.
Requires a health care provider to provide certain information to a patient who receives a positive test result from a prenatal test for such a condition, including: (1) up-to-date scientific information concerning the life expectancy, clinical course, and intellectual and functional development and treatment options for a fetus diagnosed with, or a child born with, such conditions; and (2) referrals to supportive service providers.
Requires the Government Accountability Office (GAO) to submit a report to Congress concerning the effectiveness of current health care and family support programs serving as resources for the families of children with disabilities.
Referred to the Subcommittee on Health.
Introduced in Senate
Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
Sponsor introductory remarks on measure. (CR S2982-2983)
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