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This section captures a floor statement or debate entry. It mentions legislation such as DeOndra Dixon INCLUDE Project Act of 2025, committees such as Committee on Energy and Commerce, members such as Brett Guthrie.
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July 20, 2026
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Download official House Record PDFReturn to issue contextMr. GUTHRIE. Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 3491) to amend the Public Health Service Act to authorize the Secretary of Health and Human Services to carry out a program of research, training, and investigation related to Down syndrome, and for other purposes.
The Clerk read the title of the bill.
The text of the bill is as follows:
H.R. 3491
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 “DeOndra Dixon INCLUDE
Project Act of 2025”.
SEC. 2. DEONDRA DIXON INCLUDE PROJECT.
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.
“(a) In General.—The Director of NIH shall carry out a
program of research, training, and investigation related to
Down syndrome to be known as the `INvestigation of Co-
occurring conditions across the Lifespan to Understand Down
syndromE Project' or the `INCLUDE Project'.
“(b) Program Elements.—The program under subsection (a)
shall include—
“(1) high-risk, high-reward research on the effects of
trisomy 21 on human development and health;
“(2) promoting research for participants with Down
syndrome across the lifespan, including cohort studies to
facilitate improved understanding of Down syndrome and co-
occurring conditions and development of new interventions;
“(3) expanding the number of clinical trials that are
inclusive of, or expressly for, participants with Down
syndrome, including novel biomedical and pharmacological
interventions and other therapies designed to promote or
enhance activities of daily living;
“(4) research on the biological mechanisms in individuals
with Down syndrome pertaining to structural, functional, and
behavioral anomalies and dysfunction as well as stunted
growth;
“(5) supporting research to improve diagnosis and
treatment of conditions co-occurring with Down syndrome,
including the identification of biomarkers related to risk
factors, diagnosis, and clinical research and therapeutics;
“(6) research on the causes of increased prevalence, and
concurrent treatment, of co-occurring conditions, such as
Alzheimer's disease and related dementias and autoimmunity,
in individuals with Down syndrome; and
“(7) research, training, and investigation on improving
the quality of life of individuals with Down syndrome and
their families.
“(c) Coordination; Prioritizing Nonduplicative Research.—
The Director of NIH shall ensure that—
“(1) the programs and activities of the institutes and
centers of the National Institutes of Health relating to Down
syndrome and co-occurring conditions are coordinated,
including through the Office of the Director of NIH and
priority-setting reviews conducted pursuant to section
402(b)(3); and
“(2) such institutes and centers, prioritize, as
appropriate, Down syndrome research that does not duplicate
existing research activities of the National Institutes of
Health.
“(d) Consultation With Stakeholders.—In carrying out
activities under this section, the Director of NIH shall, as
appropriate and to the maximum extent feasible, consult with
relevant stakeholders, including patient advocates, to ensure
that such activities take into consideration the needs of
individuals with Down syndrome.
“(e) Biennial Reports to Congress.—
“(1) In general.—The Director of NIH shall submit, on a
biennial basis, to the Committee on Energy and Commerce and
the Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies of the Committee on
Appropriations of the House of Representatives and the
Committee on Health, Education, Labor, and Pensions and the
Subcommittee on Labor, Health and Human Services, Education,
and Related Agencies of the Committee on Appropriations of
the Senate, a report that catalogs the research conducted or
supported under this section.
“(2) Contents.—Each report under paragraph (1) shall
include—
“(A) identification of the institute or center involved;
“(B) a statement of whether the research is or was being
carried out directly by such institute or center or by
multiple institutes and centers; and
“(C) identification of any resulting real-world evidence
that is or may be used for clinical research and medical care
for patients with Down syndrome.”.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from Kentucky (Mr. Guthrie) and the gentlewoman from Colorado (Ms. DeGette) each will control 20 minutes.
The Chair recognizes the gentleman from Kentucky.
General Leave
Mr. GUTHRIE. Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days to revise and extend their remarks on the legislation and include extraneous material on H.R. 3491.
The SPEAKER pro tempore. Is there objection to the request of the gentleman from Kentucky?
There was no objection.
Mr. GUTHRIE. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I rise in strong support of H.R. 3491, led by my colleagues Representatives DeGette and Hudson.
Institutes of Health, which advances research into Down syndrome to improve the health and quality of life of individuals with Down syndrome and their families.
syndrome, as well as the general public, with a hope of improving our understanding of the condition and advancing the quality-of-life outcomes for individuals with Down syndrome and patients facing similar medical issues.
{time} 1600
Ms. DeGETTE. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, my bill with Representative Hudson, the DeOndra Dixon INCLUDE Project Act, codifies the renaissance in Down syndrome research at NIH that was kicked off when the INCLUDE Project began in 2018. This bill sustains and encourages this critical research.
community is finally seeing research advancements that will extend and improve their lives. What we learn from this research will not only help us better understand Down syndrome but also heart disease, Alzheimer's, cancer, and many co-occurring conditions.
district of Denver, Colorado. The Crnic Institute for Down syndrome on the Anschutz Medical Campus leads more than 200 scientists at the largest Down syndrome research facility in the world. They see incredible breakthroughs every day.
individuals living with Down syndrome and their families but every single one of us because we are learning more and more about disease biology and just why some conditions work differently in people with Down syndrome.
support. I am so happy that I was able to work for many years with my friend, the former chair of the Energy and Commerce Committee, Cathy McMorris Rodgers, on this bill in the last Congress. I know it is a labor of love and deeply personal for her family and every family that has been touched by Down syndrome.
Whitten, the president of the Quincy Jones Exceptional Advocacy Award, a driving force for this bill, and a fierce advocate for her daughter and everyone with Down syndrome. It has also been an honor to work with my friend and colleague Representative Hudson, whose dedication to the Down syndrome community has been essential to push this bill closer to the finish line. I simply could not have had a better partner on this issue.
research continues to advance. This year, it must finally be enacted into law.
Mr. GUTHRIE. Mr. Speaker, I have no further speakers. I reserve the balance of my time.
Ms. DeGETTE. Mr. Speaker, I yield 2 minutes to the distinguished gentleman from New York (Mr. Tonko), another great advocate for this bill.
Mr. TONKO. Mr. Speaker, I thank my colleague from Colorado for yielding.
applaud my colleagues, Representative Diana DeGette and Richard Hudson, for championing this critical piece of legislation.
INCLUDE Project continues advancing research that improves health outcomes, expands scientific understanding, and enhances quality of life for individuals with Down syndrome and their families.
investments in Down syndrome research. Already, these investments have led to major breakthroughs in how Down syndrome interacts with other health conditions that have a high incidence in the community, such as immune system disorders, cancer, Alzheimer's, and more.
without sustained advocacy. In particular, I would like to highlight the role of the Quincy Jones Exceptional Advocacy Award and its founder, Michelle Sie Whitten, for their tireless advocacy to make this happen today.
their outstanding leadership. I look forward to supporting this measure on the House floor.
Ms. DeGETTE. Mr. Speaker, I yield back the balance of my time.
Mr. GUTHRIE. Mr. Speaker, I encourage a “yes” vote on this bill, and I yield back the balance of my time.
Mr. EVANS of Colorado. Speaker, I rise today in strong support of the Deondra Dixon INCLUDE Project Act of 2025. I was incredibly proud to support this bill as it made it's way through the legislative process in the Energy and Commerce Committee, and I am looking forward to it passing with bipartisan support on the House floor.
NIH has already been carrying out for nearly a decade to investigate the co-occuring conditions that impact Americans with Down Syndrome and their quality-of-life needs. For far too long, federal investment into Down Syndrome has paced behind need. Individuals with Down Syndrome are among our most precious vulnerable citizens—they deserve this nation's support.
instrumental in advancing this bill: Michelle Sie Whitten. As President and CEO of the Global Down Syndrome Foundation, Michelle has been a titan of advocacy in the Down Syndrome world. As the mother of a child with Down Syndrome, she has harnessed her love for the folks in this community and channeled it into action—raising millions of dollars for research and serving as a voice for those with Down Syndrome. It is safe to say that we would not be here voting on this bill if not for her tireless work and effort. I want to personally thank Michelle for her leadership and once again reiterate my support for this bill.
The SPEAKER pro tempore. The question is on the motion offered by the gentleman from Kentucky (Mr. Guthrie) that the House suspend the rules and pass the bill, H.R. 3491.
The question was taken; and (two-thirds being in the affirmative) the rules were suspended and the bill was passed.
A motion to reconsider was laid on the table.