[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[S. 1810 Introduced in Senate (IS)]







110th CONGRESS
  1st Session
                                S. 1810

  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.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                July 18 (legislative day, July 17), 2007

 Mr. Brownback introduced the following bill; which was read twice and 
  referred to the Committee on Health, Education, Labor, and Pensions

_______________________________________________________________________

                                 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.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Prenatally and Postnatally Diagnosed 
Conditions Awareness Act''.

SEC. 2. FINDINGS AND PURPOSES.

    (a) Findings.--Congress makes the following findings:
            (1) Pregnant women who choose to undergo prenatal genetic 
        testing should have access to timely, scientific, and 
        nondirective counseling about the conditions being tested for 
        and the accuracy of such tests, from health care professionals 
        qualified to provide and interpret these tests. Informed 
        consent is a critical component of all genetic testing.
            (2) A recent, peer-reviewed study and two reports from the 
        Centers for Disease Control and Prevention on prenatal testing 
        found a deficiency in the data needed to understand the 
        epidemiology of prenatally diagnosed conditions, to monitor 
        trends accurately, and to increase the effectiveness of health 
        intervention.
    (b) Purposes.--It is the purpose of this Act, after the diagnosis 
of a fetus with Down syndrome or other prenatally diagnosed conditions, 
to--
            (1) increase patient referrals to providers of key support 
        services for women who have received a positive test diagnosis 
        for Down syndrome, or other prenatally or postnatally diagnosed 
        conditions, as well as to provide up-to-date, comprehensive 
        information about life expectancy, development potential, and 
        quality of life for a child born with Down syndrome or other 
        prenatally or postnatally diagnosed condition;
            (2) strengthen existing networks of support through a 
        Centers for Disease Control and Prevention patient and provider 
        outreach program;
            (3) improve available data by incorporating information 
        directly revealed by prenatal or postnatal testing into 
        existing State-based surveillance programs for birth defects 
        and prenatally or postnatally diagnosed conditions; and
            (4) ensure that patients receive up-to-date, scientific 
        information about the accuracy of the test.

SEC. 3. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT.

    Part P of title III of the Public Health Service Act (42 U.S.C. 
280g et seq.) is amended by adding at the end the following:

``SEC. 399R. SUPPORT FOR PATIENTS RECEIVING A POSITIVE TEST DIAGNOSIS 
              OF DOWN SYNDROME OR OTHER PRENATALLY OR POSTNATALLY 
              DIAGNOSED CONDITIONS.

    ``(a) Definitions.--In this section:
            ``(1) Down syndrome.--The term `Down syndrome' refers to a 
        chromosomal disorder caused by an error in cell division that 
        results in the presence of an extra whole or partial copy of 
        chromosome 21.
            ``(2) Health care provider.--The term `health care 
        provider' means any person or entity required by State or 
        Federal law or regulation to be licensed, registered, or 
        certified to provide health care services, and who is so 
        licensed, registered, or certified.
            ``(3) Postnatally diagnosed condition.--The term 
        `postnatally diagnosed condition' means any health condition 
        identified by postnatal genetic testing or postnatal screening 
        procedures during the 12-month period beginning at birth.
            ``(4) Prenatally diagnosed condition.--The term `prenatally 
        diagnosed condition' means any fetal health condition 
        identified by prenatal genetic testing or prenatal screening 
        procedures.
            ``(5) Postnatal test.--The term `postnatal test' means 
        diagnostic or screening tests offered with respect to an 
        individual from birth to 1 year of age that is administered on 
        a required or recommended basis by a health care provider based 
        on medical history, family background, ethnic background, 
        previous test results, symptoms the child is presenting, or 
        other risk factors.
            ``(6) Prenatal test.--The term `prenatal test' means 
        diagnostic or screening tests offered to pregnant women seeking 
        routine prenatal care that are administered on a required or 
        recommended basis by a health care provider based on medical 
        history, family background, ethnic background, previous test 
        results, or other risk factors.
    ``(b) Information and Support Services.--
            ``(1) In general.--The Secretary, acting through the 
        Director of the National Institutes of Health, the Director of 
        the Centers for Disease Control and Prevention, or the 
        Administrator of the Health Resources and Services 
        Administration, may authorize and oversee certain activities, 
        including the awarding of grants, contracts or cooperative 
        agreements, to--
                    ``(A) collect, synthesize, and disseminate current 
                scientific information relating to Down syndrome or 
                other prenatally or postnatally diagnosed conditions; 
                and
                    ``(B) coordinate the provision of, and access to, 
                new or existing supportive services for patients 
                receiving a positive test diagnosis for Down syndrome 
                or other prenatally or postnatally diagnosed 
                conditions, including--
                            ``(i) the establishment of a resource 
                        telephone hotline and Internet website 
                        accessible to patients receiving a positive 
                        test result;
                            ``(ii) the expansion and further 
                        development of the National Dissemination 
                        Center for Children with Disabilities, so that 
                        such Center can more effectively conduct 
                        outreach to new and expecting parents and 
                        provide them with up-to-date information on the 
                        clinical course, life expectancy, development 
                        potential, quality of life, and available 
                        resources and services for children with Down 
                        syndrome or other prenatally and postnatally 
                        diagnosed conditions;
                            ``(iii) the expansion and further 
                        development of national and local peer-support 
                        programs, so that such programs can more 
                        effectively serve parents of newly diagnosed 
                        children;
                            ``(iv) the establishment of a national 
                        registry, or network of local registries, of 
                        families willing to adopt newborns with Down 
                        syndrome or other prenatally or postnatally 
                        diagnosed conditions, and links to adoption 
                        agencies willing to place babies with Down 
                        syndrome or other prenatally or postnatally 
                        diagnosed conditions, with families willing to 
                        adopt; and
                            ``(v) the establishment of awareness and 
                        education programs for health care providers 
                        who provide the results of prenatal or 
                        postnatal tests for Down syndrome or other 
                        prenatally or postnatally diagnosed conditions, 
                        to patients, consistent with the purpose 
                        described in section 2(b)(1) of the Prenatally 
                        and Postnatally Diagnosed Conditions Awareness 
                        Act.
            ``(2) Distribution.--In distributing funds under this 
        subsection, the Secretary shall place an emphasis on funding 
        partnerships between health care groups and disability advocacy 
        organizations.
    ``(c) Data Collection.--
            ``(1) Provision of assistance.--The Secretary, acting 
        through the Director of Centers for Disease Control and 
        Prevention, shall provide assistance to State and local health 
        departments to integrate the results of prenatal or postnatal 
        testing into State-based vital statistics and birth defects 
        surveillance programs.
            ``(2) Activities.--The Secretary shall ensure that 
        activities carried out under paragraph (1) are sufficient to 
        extract population-level data relating to national rates and 
        results of prenatal or postnatal testing.
            ``(3) Informed consent.--Prior to the reporting of the 
        results of a prenatal or postnatal test to a State or local 
        public health department under this subsection, the patient 
        involved shall be provided with a disclosure statement that 
        describes the manner in which the results of such tests will be 
        used. Such results may not be reported unless the patient 
        consents to such reporting after receipt of such disclosure 
        statement.
    ``(d) Provision of Information by Providers.--Upon receipt of a 
positive test result from a prenatal or postnatal test for Down 
syndrome or other prenatally or postnatally diagnosed conditions 
performed on a patient, the health care provider involved (or his or 
her designee) shall provide the patient with the following:
            ``(1) Up-to-date, scientific, written information 
        concerning the life expectancy, clinical course, and 
        intellectual and functional development and treatment options 
        for a fetus diagnosed with or child born with Down syndrome or 
        other prenatally or postnatally diagnosed conditions.
            ``(2) Referral to supportive services providers, including 
        information hotlines specific to Down syndrome or other 
        prenatally or postnatally diagnosed conditions, resource 
        centers or clearinghouses, and other education and support 
        programs as described in subsection (b)(2).
    ``(e) Privacy.--
            ``(1) In general.--Notwithstanding subsections (c) and (d), 
        nothing in this section shall be construed to permit or require 
        the collection, maintenance, or transmission, without the 
        health care provider obtaining the prior, written consent of 
        the patient, of--
                    ``(A) health information or data that identify a 
                patient, or with respect to which there is a reasonable 
                basis to believe the information could be used to 
                identify the patient (including a patient's name, 
                address, healthcare provider, or hospital); and
                    ``(B) data that are not related to the epidemiology 
                of the condition being tested for.
            ``(2) Guidance.--Not later than 180 days after the date of 
        enactment of this section, the Secretary shall establish 
        guidelines concerning the implementation of paragraph (1) and 
        subsection (d).
    ``(f) Reports.--
            ``(1) Implementation report.--Not later than 2 years after 
        the date of enactment of this section, and every 2 years 
        thereafter, the Secretary shall submit a report to Congress 
        concerning the implementation of the guidelines described in 
        subsection (e)(2).
            ``(2) GAO report.--Not later than 1 year after the date of 
        enactment of this section, the Government Accountability Office 
        shall submit a report to Congress concerning the effectiveness 
        of current healthcare and family support programs serving as 
        resources for the families of children with disabilities.
    ``(g) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section, $5,000,000 for each of fiscal 
years 2008 through 2012.''.
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