[Congressional Record Volume 172, Number 118 (Monday, July 20, 2026)]
[House]
[Pages H4649-H4651]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
DEONDRA DIXON INCLUDE PROJECT ACT OF 2025
Mr. 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,
[[Page H4650]]
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.
This bill would authorize the INCLUDE Project at the National
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.
This project investigates conditions that affect people with Down
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.
I encourage my colleagues to support this bill, and I reserve the
balance of my time.
{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.
After being left behind by NIH for nearly 20 years, the Down syndrome
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.
I am so proud that much of this work is happening right in my home
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.
This type of innovation puts science first and benefits not only
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.
It is why the bill passed the House last Congress with unanimous
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.
It has been an honor to also work with my constituent, Michelle Sie
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.
The INCLUDE Project Act will ensure that critical Down syndrome
research continues to advance. This year, it must finally be enacted
into law.
I urge my colleagues to join Representative Hudson and me to support
the bill, and I reserve the balance of my time.
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.
I rise in strong support of the DeOndra Dixon INCLUDE Project Act and
applaud my colleagues, Representative Diana DeGette and Richard Hudson,
for championing this critical piece of legislation.
The DeOndra Dixon INCLUDE Project Act will help ensure the NIH
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.
This legislation builds upon one of our Nation's most successful
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.
[[Page H4651]]
Every one of these breakthroughs carries the hope for a brighter
tomorrow for individuals living with Down syndrome.
I would also like to recognize that this progress doesn't happen
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.
I again thank our co-leads, Representatives DeGette and Hudson, for
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.
This legislation provides statutory authority to a project that the
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.
I also want to recognize the efforts of a fellow Coloradan who was
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.
____________________