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[110th Congress Public Law 374]
[From the U.S. Government Printing Office]

[DOCID: f:publ374.110]

[[Page 122 STAT. 4051]]

Public Law 110-374
110th Congress

                                 An Act

 
  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. <<NOTE: Oct. 8, 
                          2008 -  [S. 1810]>> 

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled, <<NOTE: Prenatally 
and Postnatally Diagnosed Conditions Awareness Act.>> 
SECTION 1. <<NOTE: 42 USC 201 note.>> SHORT TITLE.

    This Act may be cited as the ``Prenatally and Postnatally Diagnosed 
Conditions Awareness Act''.
SEC. 2. <<NOTE: 42 USC 280g-8 note.>> PURPOSES.

    It is the purpose of this Act to--
            (1) 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;
            (2) 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
            (3) ensure that patients receive up-to-date, evidence-based 
        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. <<NOTE: 42 USC 280g-8.>> SUPPORT FOR PATIENTS 
                          RECEIVING A POSITIVE 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.

[[Page 122 STAT. 4052]]

            ``(3) Postnatally diagnosed condition.--The term 
        `postnatally diagnosed condition' means any health condition 
        identified 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) 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 eligible entities, to--
                    ``(A) collect, synthesize, and disseminate current 
                evidence-based 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 diagnosis for Down syndrome or 
                other prenatally or postnatally diagnosed conditions, 
                including--
                          ``(i) <<NOTE: Telephone hotline.>> the 
                      establishment of a resource telephone hotline 
                      accessible to patients receiving a positive test 
                      result or to the parents of newly diagnosed 
                      infants with Down syndrome and other diagnosed 
                      conditions;
                          ``(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 range of outcomes for 
                      individuals living with the diagnosed condition, 
                      including physical, developmental, educational, 
                      and psychosocial outcomes;
                          ``(iii) the expansion and further development 
                      of national and local peer-support programs, so 
                      that such programs can more effectively serve 
                      women who receive a positive diagnosis for Down 
                      syndrome or other prenatal conditions or parents 
                      of infants with a postnatally diagnosed condition;
                          ``(iv) <<NOTE: Adoption.>> 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, interpret, or inform parents of the 
                      results of prenatal tests for Down syndrome or 
                      other prenatally or postnatally

[[Page 122 STAT. 4053]]

                      diagnosed conditions, to patients, consistent with 
                      the purpose described in section 2(b)(1) of the 
                      Prenatally and Postnatally Diagnosed Conditions 
                      Awareness Act.
            ``(2) Eligible entity.--In this subsection, the term 
        `eligible entity' means--
                    ``(A) a State or a political subdivision of a State;
                    ``(B) a consortium of 2 or more States or political 
                subdivisions of States;
                    ``(C) a territory;
                    ``(D) a health facility or program operated by or 
                pursuant to a contract with or grant from the Indian 
                Health Service; or
                    ``(E) any other entity with appropriate expertise in 
                prenatally and postnatally diagnosed conditions 
                (including nationally recognized disability groups), as 
                determined by the Secretary.
            ``(3) Distribution.--In distributing funds under this 
        subsection, the Secretary shall place an emphasis on funding 
        partnerships between health care professional groups and 
        disability advocacy organizations.

    ``(c) Provision of Information to Providers.--
            ``(1) In general.--A grantee under this section shall make 
        available to health care providers of parents who receive a 
        prenatal or postnatal diagnosis the following:
                    ``(A) Up-to-date, evidence-based, written 
                information concerning the range of outcomes for 
                individuals living with the diagnosed condition, 
                including physical, developmental, educational, and 
                psychosocial outcomes.
                    ``(B) Contact information regarding support 
                services, including information hotlines specific to 
                Down syndrome or other prenatally or postnatally 
                diagnosed conditions, resource centers or 
                clearinghouses, national and local peer support groups, 
                and other education and support programs as described in 
                subsection (b)(2).
            ``(2) Informational requirements.--Information provided 
        under this subsection shall be--
                    ``(A) culturally and linguistically appropriate as 
                needed by women receiving a positive prenatal diagnosis 
                or the family of infants receiving a postnatal 
                diagnosis; and
                    ``(B) approved by the Secretary.

    ``(d) Report.--Not later than 2 years after the date of enactment of 
this section, the Government Accountability Office shall submit a report 
to Congress concerning the effectiveness of current

[[Page 122 STAT. 4054]]

 healthcare and family support programs serving as resources for the 
families of children with disabilities.''.

    Approved October 8, 2008.

LEGISLATIVE HISTORY--S. 1810:
---------------------------------------------------------------------------

CONGRESSIONAL RECORD, Vol. 154 (2008):
            Sept. 23, considered and passed Senate.
            Sept. 25, considered and passed House.

                                  <all>
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