[United States Statutes at Large, Volume 122, 110th Congress, 2nd Session]
[From the U.S. Government Publishing Office, www.gpo.gov]

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 4052]]
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 4053]]
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 4054]]
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.