I 
112TH CONGRESS 
1ST SESSION H. R. 2696 
To amend the Public Health Service Act to expand and intensify programs 
of the National Institutes of Health and the Centers for Disease Control 
and Prevention with respect to translational research and related activi-
ties concerning Down syndrome, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
JULY 29, 2011 
Mrs. MCMORRIS RODGERS (for herself, Mr. VAN HOLLEN, and Mr. SESSIONS) 
introduced the following bill; which was referred to the Committee on En-
ergy and Commerce 
A BILL 
To amend the Public Health Service Act to expand and 
intensify programs of the National Institutes of Health 
and the Centers for Disease Control and Prevention with 
respect to translational research and related activities 
concerning Down syndrome, and for other purposes. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Trisomy 21 Research 
Resource Act of 2011’’. 
SEC. 2. FINDINGS. 
The Congress makes the following findings: 
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(1) The father of modern genetics, Dr. Jerome 
Lejeune, discovered the extra chromosome 21 re-
sponsible for the condition, known as Down syn-
drome, which he called Trisomy 21 in January 
1959. His discovery has opened the doors of genetics 
to new generations of researchers. 
(2) Down syndrome was named after Dr. John 
Langdon Down, the first physician to describe the 
syndrome. 
(3) Down syndrome is the most frequent ge-
netic cause of intellectual and developmental disabil-
ities and associated medical problems and occurs in 
one out of 691 live births, in all races and economic 
groups. Intellectual disability, formerly mental retar-
dation, is a disability characterized by significant 
limitations both in intellectual functioning and in 
adaptive behavior, which covers many everyday so-
cial and practical skills. This disability originates be-
fore birth and lasts a lifetime. 
(4) Chromosomes are cell structures that hold 
our genes. Genes are the instructions that cells give 
that determine things such as eye color, blood type, 
and susceptibility to disease. Human cells normally 
contain 23 pairs of chromosomes, one pair from the 
mother and one pair from the father. 
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(5) Down syndrome occurs when, because of 
cell division error, there are 3 partial or total copies 
of chromosome 21 rather than the normal 2. Be-
cause of the extra copy of chromosome 21, people 
with Down syndrome are more susceptible to dis-
eases including Alzheimer’s disease, leukemia, con-
genital heart disease, seizures, and diabetes. How-
ever, people with Down syndrome may be protected 
from other common diseases including athero-
sclerosis, hypertension, and solid tumors such as 
brain, gastrointestinal, and breast tumors. There-
fore, the study of Down syndrome may lead to novel 
treatments of common diseases that affect millions 
of Americans. Lead researcher, Dr. Bill Mobely is 
quoted as saying ‘‘We’re not just asking what our 
country can do for people with Down syndrome, 
we’re asking what studies of people can do for our 
country and the world.’’. 
(6) There are more than 400,000 people living 
with Down syndrome in the United States. 
(7) Down syndrome incidence increases with the 
age of the mother, but due to higher fertility rates 
in younger women, the majority of children with 
Down syndrome are born to women under 35 years 
of age. 
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(8) Life expectancy for people with Down syn-
drome has increased dramatically in recent decades, 
but varies significantly across various ethnic groups. 
People with Down syndrome attend school, work, 
participate in decisions that concern them, and con-
tribute to society in many meaningful ways. 
(9) The Children’s Health Act of 2000 (Public 
Law 106–310) amended the Public Health Service 
Act (42 U.S.C. 201 et seq.) and included a number 
of provisions that addressed the research and sur-
veillance needs of many disabilities such as autism, 
traumatic brain injury, Fragile X syndrome, juvenile 
diabetes, asthma, epilepsy, and others. However, this 
landmark legislation did not address the significant 
research, surveillance, and clinical care needs of 
Down syndrome and thus has been an impediment 
to progress in the Down syndrome research commu-
nity over the last decade. This Act attempts to in-
corporate Down syndrome as an area of permissible 
research and surveillance at the National Institutes 
of Health and the Centers for Disease Control and 
Prevention and will foster a better understanding of 
Down syndrome. 
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SEC. 3. NIH DOWN SYNDROME RESEARCH ACTIVITIES. 
Part B of title IV of the Public Health Service Act 
(42 U.S.C. 284 et seq.) is amended by adding at the end 
the following: 
‘‘SEC. 409K. DOWN SYNDROME RESEARCH ACTIVITIES. 
‘‘(a) EXPANSION, INTENSIFICATION, AND COORDINA-
TION OF ACTIVITIES.— 
‘‘(1) IN GENERAL.—The Director of NIH, act-
ing through the director of the Eunice Kennedy 
Shriver National Institute of Child Health and 
Human Development, shall expand and intensify 
programs of the National Institutes of Health with 
respect to research and related activities concerning 
Down syndrome. The Director of NIH shall carry 
out such programs in coordination with a working 
group composed of representatives of the relevant in-
stitutes, centers, offices, and agencies of the Na-
tional Institutes of Health. 
‘‘(2) NIH RESEARCH
PLAN
ON
DOWN
SYN-
DROME.—The Director of NIH shall publish a Re-
search Plan on Down Syndrome, and update it every 
five years or as appropriate. 
‘‘(b) ACTIVITIES.—In expanding and intensifying 
programs under subsection (a)(1): 
‘‘(1) BASIC, TRANSLATIONAL, AND
CLINICAL 
RESEARCH.—Building on the comprehensive re-
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