diversity
Words Matter, Actions Have Impact: Updating the NIH Mission Statement
Posted on by Lawrence Tabak, D.D.S., Ph.D.

I’ve previously written and spoken about how diverse perspectives are essential to innovation and scientific advancement.1 Scientists and experts with different backgrounds and lived experiences can offer diverse and creative solutions to solve complex problems. We’re taking steps to create a culture within the biomedical and behavioral research enterprise of inclusion, equity, and respect for every member of society. We are also working to strengthen our efforts to include populations in research that have not been historically included or equitably treated.
As part of our effort to ensure that all people are included in NIH research, we’re updating our mission statement to reflect better the spirit of the agency’s work to optimize health for all people. The proposed, new statement is as follows:
“To seek fundamental knowledge about the nature and behavior of living systems and to apply that knowledge to optimize health and prevent or reduce illness for all people.”
Recently, we asked a team of subject matter experts to form a subgroup of the Advisory Committee to the Director’s Working Group on Diversity to advise NIH on how we can support the inclusion of people with disabilities in the scientific workforce and in the research enterprise. One of the subgroup’s recommendations was to update the current NIH mission statement to remove “reducing disability.” The subgroup explained that this language could be interpreted as perpetuating ableist beliefs that people with disabilities are flawed and need to be “fixed.”
Disability is often viewed solely as a medical problem requiring a cure or correction. However, this view can be stigmatizing as it focuses only on a perceived flaw in the individual. It does not account for how people identify and view themselves. It also does not account for the ways that society can be unaccommodating for people with disabilities.2,3 It’s important that we recognize the varied, nuanced and complex lived experiences among people with disabilities, many of whom may also face additional barriers as members of racial, ethnic, sexual and gender minority groups, people with lower incomes, and people who live in rural communities that are medically underserved.
Some of you may recall that we updated our mission statement in 2013 to remove phrasing that implied disability was a burden, since many people do not find their disabilities to be burdensome. As we re-examine our mission statement again in 2023, I’m reminded that strengthening diversity, equity, inclusion and accessibility (DEIA) is an ongoing process requiring our sustained engagement.
The input we’ve received has made it clear that words matter—language can perpetuate prejudices and implicit attitudes, which in turn can affect people’s behavior. We also acknowledge that it is time for the agency to review and consider how the words of our mission statement may affect the direction of our science.
In response, we are seeking the public’s input on the proposed, revised statement to ensure that it reflects the NIH mission as accurately as possible. The NIH mission should be inclusive of those who conduct research, those who participate in research, and those we serve—the American public. Anyone interested in providing feedback can send it to this submission website through Nov. 24, 2023.
We are grateful for the subgroup’s work and appreciate their time examining this issue in depth. I also want to recognize the helpful feedback that we’ve received from the disability community within NIH through the years, including recent listening sessions that helped guide the development of NIH’s DEIA Strategic Plan.
Going beyond the scientific workforce, both the Strategic Plan and the subgroup’s report recognize the importance of research on health disparities. People with disabilities often experience health conditions leading to poorer health and face discrimination, inequality and structural barriers that inhibit access to health care, resulting in poorer health outcomes. NIH recently designated people with disabilities as a population with health disparities to encourage research specific to the health issues and unmet health needs of the disability community. NIH also issued a funding opportunity calling for research applications that address the intersecting impact of disability, race, ethnicity, and socioeconomic status on healthcare access and health outcomes.
The subgroup provided additional recommendations that we’re in the process of reviewing. We know one of our key challenges is data gathering that would give us a better snapshot of the workforce and the research we support. According to the CDC, 1 in 4 adults in the United States have a disability. However, in 2022 only 1.3% of principal investigators on NIH research grant applications and awards self-reported a disability. In 2022, 8.6% of the NIH workforce reported having a disability; however, I recognize that this is likely not reflective of the true percentage. We know that some people do not want to self-disclose for numerous reasons, including the fear of discrimination.
We hope that, in part, changing the mission statement would be a step in the right direction of changing the culture at NIH and the larger biomedical and behavioral research enterprise. I know that our efforts have sometimes fallen short, but we will continually work to foster a culture of inclusive excellence where people with disabilities and all people feel like they truly belong and are embraced as an asset to the NIH mission.
References:
[1] MA Bernard et al. The US National Institutes of Health approach to inclusive excellence. Nature Medicine DOI:10.1038/s41591-021-01532-1 (2021)
[2] DS Dunn & EE Andrews. Person-first and identity-first language: Developing psychologists’ cultural competence using disability language The American Psychologist DOI: 10.1037/a0038636 (2015)
[3] International Classification of Functioning, Disability and Health (2002) Towards a Common Language for Functioning, Disability and Health. World Health Organization https://cdn.who.int/media/docs/default-source/classification/icf/icfbeginnersguide.pdf
Links:
ACD Working Group on Diversity, Subgroup on Individuals with Disabilities, NIH
Request for Information: Inviting Comments and Suggestions on Updating the NIH Mission Statement, NIH
NIH designates people with disabilities as a population with health disparities, Sept. 26, 2023, NIH News Releases
NIH-Wide Strategic Plan for Diversity, Equity, Inclusion, and Accessibility (DEIA), NIH
Disability and Health Overview, CDC
Data on Researchers’ Self-Reported Disability Status, NIH Office Of Extramural Research
Total NIH Workforce Demographics for Fiscal Year 2022 Fourth Quarter, NIH Office of Equity, Diversity, and Inclusion
Gratitude for Biomedical Progress and All Those Who Make It Possible
Posted on by Lawrence Tabak, D.D.S., Ph.D.

It’s good for our health to eat right, exercise, and get plenty of rest. Still, many other things contribute to our sense of wellbeing, including making it a point to practice gratitude whenever we can. With this in mind, I can’t think of a better time than Thanksgiving to recognize just a few of the many reasons that I—and everyone who believes in the mission of the National Institutes of Health (NIH)—have to be grateful.
First, I’m thankful for the many enormously talented people with whom I’ve worked over the past year while performing the duties of the NIH Director. Particular thanks go to those on my immediate team within the Office of the Director. I could not have taken on this challenge without their dedicated support.
I’m also gratified by the continued enthusiasm and support for biomedical research from so many different corners of our society. This includes the many thousands of unsung, patient partners who put their time, effort, and, in some cases, even their lives on the line for the sake of medical progress and promising treatment advances. Without them, clinical research—including the most pivotal clinical trials—simply wouldn’t be possible.
I am most appreciative of the continuing efforts at NIH and across the broader biomedical community to further enable diversity, equity, inclusion, and accessibility within the biomedical research workforce and in all the work that NIH supports.
High on my Thanksgiving list is the widespread availability of COVID-19 bivalent booster shots. These boosters not only guard against older strains of the coronavirus, but also broaden immunity to the newer Omicron variant and its many subvariants. I’m also tremendously grateful for everyone who has—or soon will—get boosted to protect yourself, your loved ones, and your communities as the winter months fast approach.
Another big “thank you” goes out to all the researchers studying Long COVID, the complex and potentially debilitating constellation of symptoms that strikes some people after recovery from COVID-19. I look forward to more answers as this work continues and we certainly couldn’t do it without our patient partners.
I’d also like to express my appreciation for the NIH’s institute and center directors who’ve contributed to the NIH Director’s Blog to showcase NIH’s broad and diverse portfolio of promising research.
Finally, a special thanks to all of you who read this blog. As you gather with family and friends to celebrate this Thanksgiving holiday, I hope the time you spend here gives you a few more reasons to feel grateful and appreciate the importance of NIH in turning scientific discovery into better health for all.
Tackling Complex Scientific Questions Requires a Team Approach
Posted on by Nora D. Volkow, M.D., National Institute on Drug Abuse

During the COVID-19 pandemic, we have seen unprecedented, rapid scientific collaboration, as experts around the world in discrete, previously disconnected fields, have found ways to collaborate to face a common cause. For example, physicists helped respiratory specialists understand how virus particles could spread in air, leading to improved mitigation strategies. Specialists in cardiovascular science, neuroscience, immunology, and other fields are now working together to understand and address Long COVID. Over the past two years, we have also seen remarkable international sharing of epidemiological data and information on effects of vaccines.
Science is increasingly a team activity, which is true for many fields, not just biomedicine. The professional diversity of research teams reflects the increased complexity of the questions science is called upon to answer. This is especially obvious in the study of the brain, which is the most complex system known to us.
The NIH’s Brain Research Through Advancing Innovative Neurotechnologies® (BRAIN) Initiative, with the goal of vastly enhancing neuroscience through new technologies, includes research teams with neuroscientists, engineers, mathematicians, physicists, data scientists, ethicists, and more. Nearly half (47 percent) of grant awards have multiple principal investigators.
Besides the BRAIN Initiative, other multi-institute NIH research projects are applying team science to complex research questions, such as those related to neurodevelopment, addiction, and pain. The Helping to End Addiction Long-term® Initiative, or NIH HEAL Initiative®, created a team-based research framework to advance promising pain therapeutics quickly to clinical testing.
In the Adolescent Brain Cognitive Development (ABCD) study, which is led by NIDA in close partnership with NIH’s National Institute on Alcohol Abuse and Alcoholism (NIAAA), and other NIH institutes, 21 research centers are collecting behavioral, biospecimen, and neuroimaging data from 11,878 children from age 10 through their teens. Teams led by experts in adolescent psychiatry, developmental psychology, and pediatrics interview participants and their families. These experts then gather a battery of health metrics from psychological, cognitive, sociocultural, and physical assessments, including collection and analysis of various kinds of biospecimens (blood, saliva). Further, experts in biophysics gather information on the structure and function of participants’ brains every two years.
A similar study of young children in the first decade of life beginning with the prenatal period, the HEALthy Brain and Child Development (HBCD) study, supported by HEAL, NIDA, and several other NIH institutes and centers, is now underway at 25 research sites across the country. A range of scientific specialists, similar to that in the ABCD study, is involved in this effort. In this case, they are aided by experts in obstetric care and in infant neuroimaging.
For both of these studies, teams of data scientists validate and curate all the information generated and make it available to researchers across the world. This makes it possible to investigate complex questions such as human neurodevelopmental diversity and the effects of genes and social experiences and their relation to mental health. More than half of the publications using ABCD data have been authored by non-ABCD investigators taking advantage of the open-access format.
Yet, institutions that conduct and fund science—including NIH—have been slow to support and reward collaboration. Because authorship and funding are so important in tenure and promotion decisions at universities, for example, an individual’s contribution to larger, multi-investigator projects on which they may not be the grantee or lead author on a study publication may carry less weight.
For this reason, early-career scientists may be particularly reluctant to collaborate on team projects. Among the recommendations of a 2015 National Academies of Sciences, Engineering, and Medicine (NASEM) report, Enhancing the Effectiveness of Team Science, was that universities and other institutions should find effective ways to give credit for team-based work to assist promotion and tenure committees.
The strongest teams will be diverse in other respects, not just scientific expertise. Besides more actively fostering productive collaborations across disciplines, NIH is making a more concerted effort to promote racial equity and inclusivity in our research workforce, both through the NIH UNITE Initiative and through Institute-specific initiatives like NIDA’s Racial Equity Initiative.
To promote diversity, inclusivity, and accessibility in research, the BRAIN Initiative recently added a requirement in most of its funding opportunity announcements (FOAs) that has applicants include a Plan for Enhancing Diverse Perspectives (PEDP) in the proposed research. The PEDPs are evaluated and scored during the peer review as part of the holistic considerations used to inform funding decisions. These long-overdue measures will not only ensure that NIH-funded science is more diverse, but they are also important steps toward studying and addressing social determinants of health and the health disparities that exist for so many conditions.
Increasingly, scientific discovery is as much about exploring new connections between different kinds of researchers as it is about finding new relationships among different kinds of scientific databases. The challenges before us are great—ending the COVID pandemic, finding a solution to the addiction and overdose crisis, and so many others—and increased collaboration between scientists will give us the greatest chance to successfully overcome these challenges.
Links:
Nora Volkow’s Blog (National Institute on Drug Abuse/NIH)
Adolescent Brain Cognitive Development Study
Brain Research Through Advancing Innovative Neurotechnologies® (BRAIN) Initiative (NIH)
Racial Equity Initiative (NIDA)
Note: Acting NIH Director Lawrence Tabak has asked the heads of NIH’s Institutes and Centers (ICs) to contribute occasional guest posts to the blog to highlight some of the interesting science that they support and conduct. This is the 13th in the series of NIH IC guest posts that will run until a new permanent NIH director is in place.
Unlocking Potential in The Next Generation of Scientists
Posted on by Griffin P. Rodgers, M.D., M.A.C.P., National Institute of Diabetes and Digestive and Kidney Diseases

While talent is everywhere, opportunity is not. That belief, and meeting people where they are, have been the impetus for the efforts of NIH’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to nurture diverse research talent in the Pacific Islands. Most recently that effort manifested in opening a new biomedical research laboratory at Southern High School, located in Santa Rita village on the island of Guam.
One of seven research labs in the Pacific Islands established under NIDDK’s Short-Term Research Experience Program to Unlock Potential (STEP-UP), the facility provides research training to high school and college students from historically underserved populations, which is the mission of STEP-UP. The goal is to foster a diverse, talented scientific workforce.
Created by NIDDK more than 20 years ago, STEP-UP aims to make opportunities accessible to aspiring scientists nationwide, regardless of their background or zip code. In 2009, we expanded the program to the Pacific Islands. By working with academic and nonprofit coordinating centers throughout the United States and its Pacific territories, the program enables students to gain hands-on research experience, one-on-one mentorship, and access to modern laboratory techniques without travelling far from home.
For Mata’uitafa Solomona-Faiai, a Ph.D. student at Yale University School of Public Health, New Haven, CT, the exposure to science through STEP-UP turned into a passion for research. Solomona-Faiai participated in STEP-UP as a high schooler in American Samoa, and again as a college undergraduate. After getting her master’s degree at George Washington University in Washington, D.C., she returned to American Samoa to conduct epidemiology research—and became a co-mentor to high school STEP-UP students.
Her experiences in STEP-UP made her realize she wanted to pursue a life of public health research and gave her the skills to help pave that path. I was delighted to learn that Solomona-Faiai recently received an NIDDK Diversity Supplement to help support her research, which will focus on improving diabetes outcomes among adolescents from the Pacific Islands. She also hopes one day to run her own research group as an independent principal investigator, and I’m confident in her tenacity to make that happen!
Solomona-Faiai is among more than 2,300 students who have participated in STEP-UP since 2000. Her story embodies the scientific potential we can access if we contribute the right resources and tools. Early evaluation results of STEP-UP from 2002 to 2018 showed that many of the program’s participants have pursued careers as researchers, physicians, and physician-scientists [1]. In addition, of the more than 300 high school STEP-UP participants in the Pacific Islands, most have gone on to attend four-year universities, many majoring in STEM disciplines [2]. I’m heartened to know our efforts are paying off.
Bringing scientific opportunity to the Pacific Islands has entailed more than just placing students into research labs. We found we had to help create infrastructure—building labs in often under-resourced areas where nearly no biomedical infrastructure previously existed.
Since 2008, NIDDK has helped establish research labs at high schools and community colleges in the American Samoa, Commonwealth of the Northern Mariana Islands, Republic of the Marshall Islands, Federated States of Micronesia, Republic of Palau, and now Guam. The labs are also available to faculty to conduct their own science and to train as mentors. Having the support of their teachers is particularly important for students in these areas, many of whom have never heard of biomedical research before. For them, the labs often provide their first real exposure to science.
As proud as I am of the strides we’ve made, I know we have much more work to do. That’s why I’m grateful to the unwavering commitment of my colleagues, including Lawrence Agodoa who has pioneered STEP-UP and other programs in NIDDK’s Office of Minority Health Research Coordination; Robert Rivers, who coordinates NIDDK’s training programs; and George Hui at University of Hawaii at Manoa, who has directed the Pacific STEP-UP for 15 years.
They, like so many of NIDDK’s staff, partners, and grantees, will continue to work relentlessly to achieve our institute’s vision of developing a talented biomedical research workforce that fully represents the diverse fabric of the United States and its territories.
This month, we welcome a new class of STEP-UP participants, and I hope that, like Solomona-Faiai, they’ll experience the excitement of scientific discovery that will help shape their career goals and propel them to attain those goals. And I’m reminded of the tremendous responsibility we have to nurture and support the next generation of scientists. After all, the future of our nation’s health is in their hands.
References:
[1] NIDDK’s short-term research experience for underrepresented persons (STEP-UP) program. Rivers, R., Brinkley, K., Agodoa, L. JHDRP. 2019 Summer; 12: 1-2.
[2] Promoting local talents to fight local health issues: STEP-UP in the Pacific. Golshan, A., Hui, G. JHDRP. 2019 Summer; 12: 31-32.
Links:
Short-Term Research Experience Program to Unlock Potential (National Institute of Diabetes and Digestive and Kidney Diseases/NIH)
Office of Minority Health Research Coordination (NIDDK)
Note: Acting NIH Director Lawrence Tabak has asked the heads of NIH’s Institutes and Centers (ICs) to contribute occasional guest posts to the blog to highlight some of the interesting science that they support and conduct. This is the 12th in the series of NIH IC guest posts that will run until a new permanent NIH director is in place.
Discussing Maternal Health with Vice President Harris
Posted on by Lawrence Tabak, D.D.S., Ph.D.

All of Us: Release of Nearly 100,000 Whole Genome Sequences Sets Stage for New Discoveries
Posted on by Joshua Denny, M.D., M.S., and Lawrence Tabak, D.D.S., Ph.D.

Nearly four years ago, NIH opened national enrollment for the All of Us Research Program. This historic program is building a vital research community within the United States of at least 1 million participant partners from all backgrounds. Its unifying goal is to advance precision medicine, an emerging form of health care tailored specifically to the individual, not the average patient as is now often the case. As part of this historic effort, many participants have offered DNA samples for whole genome sequencing, which provides information about almost all of an individual’s genetic makeup.
Earlier this month, the All of Us Research Program hit an important milestone. We released the first set of nearly 100,000 whole genome sequences from our participant partners. The sequences are stored in the All of Us Researcher Workbench, a powerful, cloud-based analytics platform that makes these data broadly accessible to registered researchers.
The All of Us Research Program and its many participant partners are leading the way toward more equitable representation in medical research. About half of this new genomic information comes from people who self-identify with a racial or ethnic minority group. That’s extremely important because, until now, over 90 percent of participants in large genomic studies were of European descent. This lack of diversity has had huge impacts—deepening health disparities and hindering scientific discovery from fully benefiting everyone.
The Researcher Workbench also contains information from many of the participants’ electronic health records, Fitbit devices, and survey responses. Another neat feature is that the platform links to data from the U.S. Census Bureau’s American Community Survey to provide more details about the communities where participants live.
This unique and comprehensive combination of data will be key in transforming our understanding of health and disease. For example, given the vast amount of data and diversity in the Researcher Workbench, new diseases are undoubtedly waiting to be uncovered and defined. Many new genetic variants are also waiting to be identified that may better predict disease risk and response to treatment.
To speed up the discovery process, these data are being made available, both widely and wisely. To protect participants’ privacy, the program has removed all direct identifiers from the data and upholds strict requirements for researchers seeking access. Already, more than 1,500 scientists across the United States have gained access to the Researcher Workbench through their institutions after completing training and agreeing to the program’s strict rules for responsible use. Some of these researchers are already making discoveries that promote precision medicine, such as finding ways to predict how to best to prevent vision loss in patients with glaucoma.
Beyond making genomic data available for research, All of Us participants have the opportunity to receive their personal DNA results, at no cost to them. So far, the program has offered genetic ancestry and trait results to more than 100,000 participants. Plans are underway to begin sharing health-related DNA results on hereditary disease risk and medication-gene interactions later this year.
This first release of genomic data is a huge milestone for the program and for health research more broadly, but it’s also just the start. The program’s genome centers continue to generate the genomic data and process about 5,000 additional participant DNA samples every week.
The ultimate goal is to gather health data from at least 1 million or more people living in the United States, and there’s plenty of time to join the effort. Whether you would like to contribute your own DNA and health information, engage in research, or support the All of Us Research Program as a partner, it’s easy to get involved. By taking part in this historic program, you can help to build a better and more equitable future for health research and precision medicine.
Note: Joshua Denny, M.D., M.S., is the Chief Executive Officer of NIH’s All of Us Research Program.
Links:
All of Us Research Program (NIH)
Join All of Us (NIH)
Welcoming Future Research Leaders to NIH
Posted on by Dr. Francis Collins

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