S. 1810 

One Hundred Tenth Congress 

of the 

United States of America 

AT THE SECOND SESSION 

Begun and held at the City of Washington on Thursday, 

the third day of January, two thousand and eight 

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. 

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. 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. 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. 
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‘‘(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) 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) 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 
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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 
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healthcare and family support programs serving as resources for 

the families of children with disabilities.’’. 

Speaker of the House of Representatives. 

Vice President of the United States and

President of the Senate.