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Words Matter, Actions Have Impact: Updating the NIH Mission Statement

Posted on by Lawrence Tabak, D.D.S., Ph.D.

Cartoon of scientists working with DNA, microscopes and data, leading to two doctors talking with a patient who is in a wheelchair.
Credit: Donny Bliss, NIH

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

Advisory Committee to the Director Working Group on Diversity Subgroup on Individuals with Disabilities: Report, 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.

Group of people holding hands around a dinner table
Credit: Shutterstock/Rawpixel.com

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.


STEM Education and Training Builds Diversity Among Next Generation of Biomedical Scientists

Posted on by Jon Lorsch, Ph.D., National Institute of General Medical Sciences

cartoon scientists working together
Credit: National Institute of General Medical Sciences, NIH

Nelson Mandela said, “Education is the most powerful weapon which you can use to change the world.” At NIH’s National Institute of General Medical Sciences (NIGMS), we believe that educating future and current scientists from diverse backgrounds benefits the entire biomedical research enterprise, changing the world through advances in disease diagnosis, treatment, and prevention.

As the summer winds down and students and educators embark on a new school year, I thought I’d highlight some of our educational resources that complement science, technology, engineering, and math (STEM) curricula. I’d also like to draw your attention to training programs designed to inspire and support research careers.

STEM Programs and Resources from NIH

The NIGMS Science Education Partnership Awards (SEPAs) are resources that provide opportunities for pre-K-12 students from underserved communities to access STEM educational resources. It lets them aspire to careers in health research.

The SEPA grants in almost every state support innovative, research-based, science education programs, furthering NIGMS’ mission to ensure a strong and diverse research ecosystem. Resources generated through SEPAs are free, mapped to state and national teaching standards for STEM, and rigorously evaluated for effectiveness. These resources include mobile laboratories, health exhibits in museums and science centers, educational resources for students, and professional development for teachers.

One SEPA program at Purdue University College of Veterinary Medicine, West Lafayette, IN, pairs veterinarians from their nationwide “superhero” League of VetaHumanz with local schools or community centers that support underserved students. These professional veterinarians, also from diverse backgrounds, strive to help young students from underrepresented groups envision future careers caring for animals.

Another SEPA program at Baylor University, Waco, TX, is increasing access to chemistry labs for high schoolers with blindness. It uses a robotic reactor with enhanced safety features to eliminate many dangers of synthetic organic chemistry. Students with blindness can control the robot to conduct experiments in a similar fashion to their sighted counterparts. The robot is housed within an airtight, blast-proof glove box, and it can perform common chemistry operations such as weighing and dispensing solid or liquid reagents; delivering solvents; combining reagents with the solvents; and stirring, heating, or cooling the reaction mixtures.

As noted in the 2021 report from the White House’s Office of Science and Technology Policy, “equity and inclusion are fundamental prerequisites for making high-quality STEM education accessible to all Americans and will maximize the creative capacity of tomorrow’s workforce.” I believe this statement falls right in line with the spirit of SEPAs.

New NIH-Wide STEM Teaching Resources Website

To help educators find free science education content, we recently launched a STEM teaching resources website. It includes NIH-wide teaching materials as well as those from SEPA programs for grades K-12, categorized by different health and research topic areas.

The NIGMS free educational resource Pathways, designed for educators and aspiring scientists in grades 6-12, is one of many resources available through the STEM website. Each issue of Pathways provides information about basic biomedical science and research careers and includes a student magazine, teacher lesson plans, and interactives such as Kahoot! classroom quizzes. Our most recent vaccine science issue teaches students how COVID-19 vaccines work in the body and introduces them to scientists dedicated to vaccine research.

Programs for Early Career Scientists

While SEPA grants focus on future scientists (and their educators) in grades pre-K-12, NIGMS also has a robust research training portfolio for those at the undergraduate through postdoctoral and professional levels. These programs aim to enhance diversity by engaging and training scientists from diverse backgrounds early in their careers.

At the undergraduate level, programs like Maximizing Access to Research Careers (MARC) provide students from diverse backgrounds with mentorship and career development. We recently highlighted the MARC program at Vanderbilt University, Nashville, TN, on our Biomedical Beat blog showing the program’s impact on students.

At the other end of the spectrum, our Maximizing Opportunities for Scientific and Academic Independent Careers (MOSAIC) program helps promising postdoctoral researchers from diverse backgrounds transition into independent faculty careers. The MOSAIC scholars become part of a career development program to expand their professional networks and gain additional skills and mentoring through scientific societies. You can learn more about each of these impressive early career scientists on our MOSAIC Scholars webpages.

At NIGMS, we’re dedicated to increasing the diversity of the biomedical research workforce. Through STEM content and outreach, as well as scientist training resources, we focus on emphasizing diversity, equity, inclusion, and accessibility. This holds true with funding and programming for current scientists, and in the inspiration and training of future scientists.

Links:

STEM Teaching Resources Website (NIH)

Science Education Partnership Award (SEPA) (NIH)

SEPA Award (National Institute of General Medical Sciences/NIH)

The League of VetaHumanz: Encouraging Kids to Use Their Powers for Good! (Biomedical Beat Blog/NIGMS)

Pathways (NIGMS)

Maximizing Access to Research Careers (MARC) Awards (NIGMS)

Catching Up With ReMARCable Vanderbilt Graduates (Biomedical Beat Blog/NIGMS)

Maximizing Opportunities for Scientific and Academic Independent Careers (MOSAIC) (NIGMS)

Note: Dr. Lawrence Tabak, who performs the duties of the NIH Director, 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 15th in the series of NIH IC guest posts that will run until a new permanent NIH director is in place.


Tackling Complex Scientific Questions Requires a Team Approach

Posted on by Nora D. Volkow, M.D., National Institute on Drug Abuse

A group of people are hand in hand in a spiral. Team Science
Credit: Getty Images/melitas

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

Photo of smiling people stand with ocean behind them, over map of Guam
Caption: The Pacific STEP-UP team visits Guam for opening of NIDDK lab (l-r): George Hui, University of Hawaii at Manoa; NIDDK’s Griffin P. Rodgers and Lawrence Agodoa; Aneesa Golshan, University of Hawaii at Manoa; Robert Rivers, NIDDK. Credit: Kristina C. Sayama, University of Guam

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.


President Biden Signs Bill Strengthening Research Diversity

Posted on by Lawrence Tabak, D.D.S., Ph.D.

On March 18, President Biden signed the John Lewis National Institute of Minority Health Disparities (NIMHD) Research Endowment Revitalization Act of 2021. It was my honor to be present in the Oval Office for the signing. I’m standing at the far left along with (from l – r): Congresswoman Nanette Diaz Barragán of California; Xavier Becerra, Secretary of the U.S. Department of Health and Human Services; Congressman Frank Pallone of New Jersey; Congresswoman Nikema Williams of Georgia; and Eliseo Pérez-Stable, NIMHD director. The Act expands eligibility to help institutions build research infrastructure and recruit, train, and maintain a diverse student body and faculty. Credit: The White House

Discussing Maternal Health with Vice President Harris

Posted on by Lawrence Tabak, D.D.S., Ph.D.

It was an honor to represent NIH on April 13 at the White House’s landmark Maternal Health Cabinet Meeting, chaired by Vice President Kamala Harris (head of the table). The meeting, held in the Ceremonial Room of the White House, focused on discussing the draft White House Blueprint for Addressing the Maternal Health Crisis. During my time with the Vice President and my colleagues, I (seated at the bottom right) highlighted NIH’s actions to improve the amount of research on maternal health, as well as the diversity of researchers conducting this important work. Credit: The White House

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.

Diverse group of cartoon people with associated DNA

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)

All of Us Research Hub

Join All of Us (NIH)


Welcoming Future Research Leaders to NIH

Posted on by Dr. Francis Collins

It was my pleasure to join Marie Bernard, NIH chief officer for Scientific Workforce Diversity (SWD), in welcoming everyone to the virtual 2021 NIH Future Research Leaders Conference on June 29. The two-day conference, sponsored by SWD, offered a career-development opportunity for about 30 talented early-stage scientists interested in pursuing careers within NIH’s on-campus Intramural Research Program. These future research leaders had a chance to hear from NIH leadership and tenure-track investigators about strategies for developing an independent research career at NIH. They also will now connect with a network of scientists from across many of NIH’s 27 institutes and centers, including in their scientific focus areas. As I stated in my remarks, scientific discovery and health advancement require not only exceptional talent but diverse perspectives. Welcome to the NIH family.

Meet an Inspiring Researcher Who Helped Create COVID-19 mRNA Vaccines

Posted on by Dr. Francis Collins

More than 170 million Americans already have received COVID-19 vaccines. As this number continues to grow and expand to younger age groups, I’m filled with overwhelming gratitude for all of the researchers who worked so diligently, over the course of decades, to build the scientific foundation for these life-saving vaccines. One of them is Dr. Kizzmekia Corbett, who played a central role in the fact that, in the span of less than a year, we were able to develop safe and effective mRNA-based vaccines to protect against this devastating infectious disease.

As leader of the immunopathogenesis team at NIH’s Dale and Betty Bumpers Vaccine Research Center in Bethesda, MD, Dr. Corbett was ready, willing, and able when the COVID-19 pandemic emerged to take the critical first steps in developing what would become the Moderna and Pfizer/BioNTech mRNA vaccines. Recently, she accepted a position at Harvard University T.H. Chan School of Public Health, Boston, where she will soon open her own viral immunology lab to help inform future vaccine development for coronaviruses and other respiratory viruses.

While she was preparing for her move to Harvard, I had a chance to speak with Dr. Corbett about her COVID-19 research experience and what it was like to get immunized with the vaccine that she helped to create. Our conversation was part of an NIH Facebook Live event in which we connected virtually from our homes in Maryland. Here is a condensed version of our chat.


Collins: You’ve studied SARS, MERS, and other coronaviruses for many years. Then, in early January 2020, like all of us, you heard that something was going on that sounded worrisome in Wuhan, China. What did you think?

Corbett: Well, the story actually began for me on December 31, 2019. My boss Dr. Barney Graham sent me an email at 6 a.m. that said: “Get ready for 2020.” There had been some news of a respiratory virus outbreak in the Wuhan district of China. I honestly wrote it off as probably a strain of the flu. Then, we got back to NIH after the holidays, and it was determined around January 6 that the virus was for certain a coronavirus. That meant our team would be responding to it.

We sat down and planned to monitor the situation very closely. We knew exactly what to do, based on our past work. We would go into full force to make a vaccine—the one now known as “the Moderna vaccine” —as quickly as possible for testing in a clinical trial. The goal was to make the vaccine in 100 days. And so when the genetic sequence of this new virus came out on January 10, I sprung out of bed and so did everyone on the team. It’s been kind of a whirlwind ever since.

Collins: Tell us a little bit more about that. The sequence got posted on the internet by a Chinese scientist. So you have this sequence, and everyone gathers in NIH’s Vaccine Research Center. Then what happens?

Corbett: The cool thing about this type of technology is you don’t even need the lab to design the vaccine. All you need are the letters, or sequence, that encodes the virus’ genetic material displayed on your computer screen. We could actually do the work from our homes, obviously in close conversation with each other.

This sequence is the virus’s genetic code. Just like humans have families—brothers, sisters, cousins—viruses also have families. So, we could see when looking at the sequence of letters, how similar this particular virus was to viruses that we’ve worked with before in the coronavirus family. It was almost like “A-ha! This is the part of the sequence that represents the protein on the surface of the virus.”

We knew that we could take the sequence of that surface protein and use all of the knowledge that we had from previous years to design a vaccine. And that’s what we did. We took that sequence on our computer screen and said we said this is exactly how we want this vaccine to look. The process was as straightforward as that.

Collins: In other words, you already knew that these coronaviruses have spike proteins on their surface and that’s the thing that’s going to be really useful for making an antibody. You’d already taken this approach in developing a vaccine for MERS, right?

Corbett: Exactly, we’d done that for MERS. Vaccines are basically a way to teach your body how to see a pathogen. Over the years, as vaccinology and technology have progressed, different scientists have figured out that you don’t really need the whole virus as a part of the vaccine. You can just take a small portion of that virus to alert your body.

In this case, taking the spike protein and teaching your immune system how to specifically spot and attack it, you can now protect yourself from COVID-19. So, we used the sequence of that spike protein, with some modifications to make it much better as a vaccine. We then deliver that to you as a message—messenger RNA (mRNA) —to get your muscle cells briefly to make the spike protein. Then, your body sees that spike protein hanging out on your cells and makes a really specific immune response to it. That way the next time your body sees the spike protein, if you ever come into contact with the virus, your immune system is armed and ready to attack.

Collins: Say more about this messenger RNA approach. It’s been so revolutionary and one of the reasons that we got vaccines into people’s arms in just 11 months. Had this approach ever been used before?

Corbett: Yes, messenger RNA technologies have been in development from a basic science perspective for over 15 years. A lot of that work was funded by NIH. Soon after I got to NIH, I attended a meeting in London called Transforming Vaccinology. At the time, Moderna was a smaller company that was working to make messenger RNA technologies, mostly centered around cancer therapies. But they had started to test some flu vaccines that used messenger RNA. My question to the presenter was: “Every single time I see you guys present, it looks like mRNA technology has always worked. Can you tell me a time that it hasn’t?” And he said, “I can’t.”

So, our understanding of how this technology works to make really good vaccines predates this pandemic. I think one of the worries that many people have is how fast and how new this technology is. But all science is compounded knowledge—everything builds on itself.

Collins: Right! We only learned about messenger RNA, because back in the 1950s and 1960s, some researchers decided to figure out how the information in our genetic instruction book, our DNA, can ultimately turn into proteins. It turned out that the message that carries that information is made of RNA.

So, you knew which kinds of letters to program into the messenger RNA vaccine. Would you explain how this vaccine, its messenger RNA, produces a spike protein. Where does that step happen?

Corbett: Your cells are machines built for this kind of thing. I like to remind people that, on a day-in, day-out basis, our cells make proteins—all of the hormones and other things our bodies needs to survive. So, we’re not teaching the cells to do anything different than they would normally do. That’s important to understand.

The way that cells do this is by reading the mRNA sequence. As they’re reading that sequence, they chew it up, like eating it, and say, “Okay, this sequence is for this very specific protein.” Then, they make that protein and push it to the surface of your cells. That’s how it happens.

Collins: And for mRNA vaccines, that’s the point when your immune system says “Wait a minute! I don’t recognize that as part of me, so I’ve got to make an antibody to it.” Then you’re off to the races and develop your immunity. Now that this mRNA vaccine strategy has succeeded for COVID-19, could it be applied to other infectious diseases or even non-infectious conditions?

Corbett: Yes, I heard that about 60 new companies have sprouted up in the last year around messenger RNA technology. They have ideas for different types of infectious disease vaccines and cancer therapies. I expect that this technology will be transformative to medicine in general.

Collins: Here’s a question from social media: “Why does it take two shots for the Pfizer and the Moderna mRNA vaccines? Why isn’t one good enough?”

Corbett: The way that these vaccines work is much like an alarm clock. Imagine your immune system is in bed and the first shot is the alarm clock going off to say, “Hey, wake up and get ready.” And just like I did this morning, the immune system pressed snooze and took a little nap. But when you hear the alarm clock the second time, it’s like someone rushing into your room and pouring a cold bucket of water on you. You have no choice but to get out of bed.

That’s what the second dose of the vaccine does. It pushes your immune response to the next level. That’s why you need two shots to get the type of efficacy that you want and be fully protected for the optimal immune response.

Collins: You were a co-leader of the team that created what became the Moderna vaccine—and you ended up getting immunized with the Moderna vaccine. What did that feel like?

Corbett: It was pretty surreal. I cried. At the end of it, I felt a lot of relief after getting my vaccine, particularly after getting the second dose. There was this breath of fresh air. It was also a birthday present. I got my second dose the day before my 35th birthday, as a birthday present to myself.

Collins: I have to admit, I cried a little bit too after my second dose. It’s just the sense of relief and incredible gratitude that we’ve reached this point. Here we are with vaccines that have 95 percent effectiveness and an incredibly good safety record, which is almost better than we could have hoped for. I’m a person of faith, so there were a lot of my prayers that went into this and it sure felt like they got answered.

Corbett: Yes, same.

Collins: You are out there a lot talking to people about the vaccines. There are still about 100 million Americans that have not yet received their first dose. Many of them still unsure about getting vaccinated. What do you say to those who are on the fence?

Corbett: In this past year, I’ve spent a lot of time talking about the vaccine with people in the community. One thing that I realized, is that I don’t need to say anything unless I’m asked. I think it’s important that I listen first, instead of just speaking.

So I do that, and I try to answer people’s inquiries as specifically as possible. But people have some very broad questions. One thing that is happening is people are seeing vaccines being developed right before their eyes. That can be a little confusing. I try to explain the process, how we went from the preclinical stage all the way to the point of getting the vaccine to hundreds of millions of people. I explain how each step along the way is very highly vetted by regulatory agencies and data safety monitoring committees. I also tell them that the monitoring continues. People from the clinical trials are still being evaluated, and there’s monitoring in the real world as the vaccine is being rolled out. I think that all of those things are really important for people to know.

Collins: Another question from social media: “As a successful scientist, what advice would you give to people who are thinking about a career in science?”

Corbett: If you think you’re interested, you just have to start. There are internship programs, there are scholarship programs, there are shadowing programs all over this country and even globally that can help you get your feet wet. I think the first thing that you want to do with any career is to figure out whether or not you like it. The only way that you can do that is to just explore, explore, explore.

Collins: Didn’t you kind of roll up your sleeves and take the plunge at a young age?

Corbett: Yes, at age 16, I went off and did summer internships at the University of North Carolina. I was able to see first-hand the day-to-day life of science and what being a scientist would look like. That was really important for me. That’s what I mean by exploring.

Collins: And a follow-up question: “Is the biomedical research community welcoming to women of color?”

Corbett: Not always, frankly. I was very fortunate to have been under the wings of a lot of mentors and advocates, who have helped to advance my career to where it is now. I had great mentors at NIH. My graduate school mentor was amazing, and my main collaborator in the coronavirus field was on my dissertation committee. Even prior to this pandemic, when I was doing work that was very obscure, he checked on me very often and made sure that he had a sense of where I wanted to go and how he could help me get there, including collaborating with me.

That kind of thing is very important, particularly for women of color or anyone from a marginalized community. That’s because there will be a point where there might be a glass ceiling. Unfortunately, we don’t necessarily have the tools to break those just yet. So, someone else is going to have to break those down, and most often than not, that person is going to have to be a white man. Finding those people who are allies with you and joining in your fight for your career trajectory is very helpful.

I remember when I was choosing a college, it was a very difficult decision for me. I got accepted into Ivy League schools, and I’d gone to all of the scholarship weekends all over the country. When I was making the decision, my dad said, “Kizzy, just always go where there is love.”

That really sticks to me with every single choice that I make around my career. You want to be at a place that’s welcoming, a place that understands you, and a place that fosters the next version of who you are destined to be. You need to make sure to step back outside of the day-to-day stuff and say, “Okay, does this place love me and people like me?” It’s important to remember that’s how you thrive: when you are comfortable in and in love with your environment.

Collins: Yes, we have to move our scientific workforce into a place where it is not necessary for a white man to advocate for a talented Black woman. There’s something very wrong with that particular circumstance. As NIH Director, I want to assure you, we are motivated more than ever to change that, including through a new initiative called UNITE. We’re missing out on welcoming the talents of so many folks who currently don’t see our research agenda as theirs, and we need to change that.

Kizzmekia, this has been a lot of fun. Thank you for giving us a half-hour of your time when you’re in the midst of this crazy two-week period of moving from Bethesda to Boston. We wish you the very best for this next chapter, which I know is going to be just amazing.

Corbett: Thank you so much.

Links:

Video: COVID-19 mRNA Vaccine Q & A – Kizzmekia Corbett and Francis Collins (NIH)

Video: Lead COVID-19 scientist Kizzmekia Corbett to join Harvard Chan School faculty (Harvard University, Boston)

COVID-19 Research (NIH)

Dale and Betty Bumpers Vaccine Research Center (National Institute of Allergy and Infectious Diseases/NIH)

UNITE Initiative (NIH)


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