‘‘(E) the establishment of awareness and 
education programs for health care providers 
who provide the results of prenatal tests for 
Down syndrome or other prenatally diagnosed 
conditions, to patients, consistent with the pur-
pose described in section 2(b)(1) of the Pre-
natally Diagnosed Condition Awareness Act of 
2007. 
‘‘(c) DATA COLLECTION.— 
‘‘(1) PROVISION
OF
ASSISTANCE.—The Sec-
retary, acting through the Director of Centers for 
Disease Control and Prevention, shall provide assist-
ance to State and local health departments to inte-
grate the results of prenatal testing into State-based 
vital statistics and birth defects surveillance pro-
grams. 
‘‘(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 testing. 
‘‘(d) PROVISION OF INFORMATION BY PROVIDERS.— 
The Secretary shall ensure that in the case of a health 
care provider that performs prenatal tests for Down syn-
drome or other prenatally diagnosed conditions, such pro-
vider is eligible to participate in an activity carried out 
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under subsection (b) or (c) only if such provider (or a des-
ignee of such provider) provides assurances satisfactory to 
the Secretary that upon receipt of a positive test result 
from such a test performed on a patient, the provider (or 
designee) will 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 treat-
ment options for a fetus diagnosed with or child 
born with Down syndrome or other prenatally diag-
nosed conditions. 
‘‘(2) Referral to supportive services providers, 
including information hotlines specific to Down syn-
drome or other prenatally diagnosed conditions, re-
source centers or clearinghouses, and other edu-
cation and support programs as described in sub-
section (b)(2). 
‘‘(e) PRIVACY.— 
‘‘(1) 
IN
GENERAL.—Notwithstanding 
sub-
sections (c) and (d), nothing in this section shall be 
construed to permit or require the collection, mainte-
nance, or transmission, without the health care pro-
vider obtaining the prior, written consent of the pa-
tient, of— 
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‘‘(A) health information or data that iden-
tify 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 epi-
demiology of the condition being tested for. 
‘‘(2) GUIDANCE.—Not later than 180 days 
after the date of enactment of this section, the Sec-
retary shall establish guidelines concerning the im-
plementation of paragraph (1) and subsection (d). 
‘‘(f) REPORTS.— 
‘‘(1) IMPLEMENTATION
REPORT.—Not later 
than 2 years after the date of the enactment of this 
section, and every 2 years thereafter, the Secretary 
shall submit to Congress a report concerning the im-
plementation of the guidelines described in sub-
section (e)(2). 
‘‘(2) GAO REPORT.—Not later than 1 year 
after the date of the enactment of this section, the 
Government Accountability Office shall submit to 
Congress a report concerning the effectiveness of 
current health care and family support programs 
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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.’’. 
Æ 
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