(Vol. 1 Issue 4) By Jálin B. Johnson, director of the Office of Equity & Inclusion at the Salk Institute, and Dmitry Lyumkis, associate professor and Hearst Foundations Developmental Chair at the Salk Institute. Each year in December, the world recognizes World AIDS Day, a time when we show support for people living with HIV and remember those who have died from AIDS-related illnesses (UNAIDS, 2024). At the Salk Institute for Biological Studies, advocacy and contribution to life-changing discoveries in this area are a part of our research priorities year-round. In June of 2024, joined by San Diego Mayor Todd Gloria, we had the opportunity to address the community as a part of the annual Salk Science & Justice Series. The theme, “The Science & (In)Justice of HIV/AIDS,” brought together scientists and thought leaders alongside community members invested in advocacy and innovative science.
By Jálin B. Johnson, director of the Office of Equity & Inclusion at the Salk Institute, and Dannielle Engle, Salk assistant professor and Helen McLoraine Developmental Chair
November is Pancreatic Cancer Awareness Month. The early detection of pancreatic cancer is often complicated by a more common condition known as pancreatitis, which is a benign inflammation of the pancreas that can look very similar to pancreatic cancer. Because there is no way to distinguish between pancreatitis and pancreatic cancer, there is no early detection test for pancreatic cancer.
In historically underrepresented and minoritized communities, early detection can be even more challenging due to an array of factors, including minimal access to healthcare (in both urban and rural areas), socioeconomic barriers, deficits in how information is communicated to the community, and a perceived lack of trust in the healthcare system.
Black Americans are more likely to be diagnosed with pancreatic cancer than any other racial or ethnic group, according to the Pancreatic Cancer Action Network. They state, “There are many reasons why the incidence rate of pancreatic cancer is higher for Black Americans. We don’t know what the cause of this disparity is, but factors related to systemic racism, the environment, access to nutritious food, and barriers to quality healthcare may play a role.”
Likewise, a 2000-2018 population-based study led by Cedars-Sinai Medical Center researchers found that younger women of all races and ethnicities experienced a greater increase in pancreatic cancer incident rate compared to their counterpart men; however, younger Hispanic and Black women experienced a disproportionately greater increase. Hispanic women experienced a greater increase in incident rate compared to younger Black and White women.
Furthermore, Healio Gastroenterology reported on a recent study of pancreatic cancer trials, which offers an additional statistical window into some of these disparities.
“We know that recently there has been a heightened awareness of racial and ethnic disparities throughout our society. So, it really came as no surprise that these disparities are also present within scientific research and clinical trials. Our team wanted to know just how prevalent these disparities are within pancreatic cancer clinical trials,” Kelly Herremans, a surgical research fellow at the University of Florida College of Medicine, Gainesville, said during a press conference prior to a Digestive Diseases Week conference, as reported by Healio Gastroenterology. “We focused on this particular disease because certain racial and ethnic minorities such as Black Americans get pancreatic cancer more often, are diagnosed at younger ages, and die sooner.”
In line with the over-representation of white patients in clinical trials, we find that this also extends to patient models in laboratory research. Recognizing that pancreatic cancer is one of the deadliest cancers, both because it is often diagnosed late and because therapies are ineffective, Salk Assistant Professor Danielle Engle’s lab works to create models and representations that better illustrate the reality of what happens in pancreatic cancer patients. Even in her own work, Engle notes that more than 85% of the patient-derived organoids she and colleagues have generated are from white, non-Hispanic patients. Further, many studies do not even publish race information, highlighting a need for researchers to incorporate race, ethnicity, economic, and social factors into their work.
We believe that part of our training as scientists should include the community-building and engagement skills required to build trust and partnerships with historically marginalized communities.
When looking through a J.E.D.I. lens, we considered the following –
Are the environmental impacts facing many communities of color being factored into studies of the causes of pancreatic cancer?
At the 2021 American Association for Cancer Research Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved, researchers shared that common trial enrollment criteria may limit the generalizability of results and may not be medically justifiable. (HemOnc today, 2021).
Lack of trust in the healthcare system commonly stems from historical injustices, such as the U.S. Public Health Service Untreated Syphilis Study at Tuskegee, in which researchers did not obtain informed consent from participants, all Black men, and participants were not offered available treatments, even after penicillin became widely available. (CDC, 2024)
What steps can researchers and physicians take to help alleviate these concerns?
Following the funding –
The Department of Defense Congressionally Directed Medical Research Programs Pancreatic Cancer Research Program recently released its anticipated funding opportunities for fiscal year 2024. One area that applicants must address is “Early detection research for pancreatic cancer, including the prevalence in individuals with pre-diabetes and diabetes and/or those in underserved ethnic and minority communities.” (CDMRP March, 2024)
By Jálin B. Johnson, director of the Office of Equity & Inclusion at the Salk Institute Featuring Eiman Azim, Salk associate professor, and Sharona Ben-Haim, associate professor of clinical neurological surgery at UC San Diego Health and adjunct faculty member at the Salk Institute
Potential clinical outcomes
TBI affects more than 5 million people each year, and severe TBI is a major cause of hospitalizations and deaths around the world.
In May 2024, Mass General Brigham investigators published the results of a study that determined that patients with brain injuries who died after withdrawal of life support may have recovered. This conclusion emerged from an analysis of potential clinical outcomes for traumatic brain injury (TBI) patients enrolled in the Transforming Research and Clinical Knowledge in TBI study. The team developed a scoring model that accounted for factors such as demographics, socioeconomics, and injury characteristics. They used this model to compare TBI patients for whom life-sustaining treatment was not withdrawn to individuals with similar model scores but for whom life-sustaining treatment was withdrawn.
TBI increases the risk for developing neurodegenerative diseases
With this in mind, I considered an assessment published in Frontiers in Neuroscience. In this study, titled Traumatic brain injury-associated epigenetic changes and the risk for neurodegenerative diseases, the researchers noted that “Epidemiological studies have shown that TBI increases the risk for developing neurodegenerative diseases. However, molecular mechanisms that underlie this risk are largely unidentified. TBI triggers widespread epigenetic modifications. Similarly, neurodegenerative diseases, such as Alzheimer’s or Parkinson’s, are associated with numerous epigenetic changes. Although epigenetic changes can persist after TBI, it is unresolved if these modifications increase the risk of later neurodegenerative disease development and/or dementia.”
I reached out to Eiman Azim, associate professor and William Scandling Developmental Chair at the Salk Institute, for insights on how critical motor functions are often affected by neurodegenerative disease and injury.
“Our ability to move through the world and interact with the environment feels natural and seamless,” Azim says. “Yet the complex processes by which the nervous system coordinates body movements are fragile and are particularly vulnerable to disease and injury. For effective therapy, it is essential to understand how neural circuits are affected by damage, and, critically, how we can intervene as early as possible after an injury or during the emergence of disease to more effectively promote recovery.”
Family decisions and financial ability
The Mass General Brigham researchers went on to acknowledge that “families are often asked to make decisions to withdraw life support measures, such as mechanical breathing, within 72 hours of a brain injury.”
While looking at this study through a justice, equity, diversity and inclusion (J.E.D.I.) lens, I centered the lived experiences of many families as they navigate what can undoubtedly be described as both challenging and life-altering. As noted in Mass General Brigham’s overview of the study, “predicting outcomes following a brain injury can be challenging, yet families are asked to make decisions about continuing or withdrawing life-sustaining treatment within days of injury.”
The socioeconomic barriers that some families face when determining exactly how long they can afford to maintain this critical support is a factor that must be considered when determining the best course of care.
Neurosurgeon Sharona Ben-Haim, associate professor of clinical neurological surgery at UC San Diego Health and adjunct faculty member at the Salk Institute, has seen this decision among the families of those experiencing TBI, time and again.
“When we speak to our patients’ family members in these critical moments, we ask them to make decisions not from their own perspective, but from the perspective of their loved ones, which can be a great challenge,” Ben-Haim says. “We must ask: what does this person determine as a reasonable, meaningful quality of life?”
When looking through a J.E.D.I. lens, we considered the following –
Writing in the Journal of Neurosurgery in 2021, Vanderbilt University School of Medicine researchers noted that “while clinical management was once thought to be the main determinant of clinical outcomes, the impact of pre- and post-hospital factors is becoming increasingly realized…The interplay between socioeconomic background and the psychosocial dynamic of the family unit can also be considered important pre- and post-hospital factors that should not be overlooked. For example, participation in intensive rehabilitation is highly correlated with better improvements in functional outcomes following TBI, but many uninsured families do not have access to these resources, putting them at an increased risk of poor outcomes.
Should insurance companies be a mitigating factor in determining those for whom life-sustaining treatment is or is not withdrawn?
While there have been numerous case reviews documenting the lifetime cost of TBI treatment, each varies depending on the amount of time care is being delivered to a patient. Is the healthcare system currently equipped to offer families financial options while considering long-term versus short-term care?
According to the National Institutes of Health’s National Center for Biotechnology Information (2019), in-hospital treatment of patients with traumatic brain injury (TBI) ranged from $2,130 to $401,808. Families with various financial means from across the socioeconomic spectrum will be impacted differently by the decision of whether to keep a family member experiencing TBI on life support.
By Jálin B. Johnson, director of the Office of Equity & Inclusion at the Salk Institute, and Salk Professor Gerald Shadel, Audrey Geisel Chair in Biomedical Science and director of the San Diego-Nathan Shock Center of Excellence in the Basic Biology of Aging
On July 25, 2024, Dustin Domingo, author of the co-edited volume With Love: What We Wish We Knew About Being Queer and Filipino in America, and Pat Lindsay C. Catalla-Buscaino (aka Dr. Pinky), founder and CEO of Kuwento Co. LLC., visited the Salk community to discuss these very intersections and more.
Physical and Mental health
In the 2014 Gerontologist study, the authors “examined physical and mental health quality of life as an indicator of successful aging, among LGBT older adults.” They noted that having “an understanding of the configuration of resources and risks by age group is important for the development of aging and health initiatives tailored for this growing population.”
The researchers recognized that “physical and mental health quality of life were negatively associated with discrimination and chronic conditions and positively with social support, social network size, physical and leisure activities, substance non-use, employment, income, and being male when controlling for age and other covariates.” This was also one of the first studies to include LGBT participants greater than 60 years old, which pointed to greater lengths of time of victimization and discrimination having quantifiable negative consequences, with strong modifying influences of the social context “in which LGBT people came of age and lived.”
Launched in 2020 at Salk, in collaboration with UC San Diego and the Sanford Burnham Prebys Medical Discovery Institute, the San Diego Nathan Shock Center of Excellence in Basic Biology of Aging focuses on the heterogeneity of aging. That is, what is the biological underpinning for why not all individuals age at the same rate and are differentially susceptible to diseases and disabilities for which age is the biggest risk factor. While inherited genetics and environmental factors like exposure to pathogens and toxins clearly play a role in this, how these intersect with sex, gender, ethnicity, and lifestyle is very much an open question in need of more research.
When looking through a J.E.D.I. lens, we considered the following –
The authors of “Successful Aging Among Older LGBTQIA+ People: Future Research and Implications,” an opinion piece published in 2021 in Frontiers in Psychiatry, note that “factors such social isolation, difficulties in accessing healthcare, lack of social and family support…and greater probability of having had lifetime exposure to experiences of discrimination and social stigma related to sexual and gender identity status are all associated with the presence of negative health outcomes.
This reality is congruent with the Minority Stress Theory, which states that living with stressors throughout one’s life negatively impacts the health, well-being, and successful aging outcomes of older 2SLGBTQIA+ people.
As we focus on “Healthy Aging & Community,” how might we consider what we know of the lived experiences of ourselves and our communities, alongside our commitment to “discovering the fundamental causes of aging and finding new ways to prevent and treat age-related disease”?
How might stressful social factors (including discrimination and isolation), when paired with known genetic and environmental factors, impact healthy aging in historically marginalized communities?
Frameworks like the Health Equity Promotion Model, highlight “(a) heterogeneity and intersectionality within LGBT communities; (b) the influence of structural and environmental context; and (c) both health-promoting and adverse pathways that encompass behavioral, social, psychological, and biological processes.” How would centering health equity encourage more inclusive research?
In the early fall of 2023, I shared the hashtag #WeAreTheCitation as part of a social media calling associated with amplifying the voices of Black Women and members of the global majority within higher education and in spaces of scholarship.
Much like the embraced call to “Cite Black Women,” noting that “We are the citation” incites recognition. Doing so requires acknowledgment that the lived experiences of members of minoritized groups are significant and add valued perspectives to scholarly discussion. Additionally, this call denotes that these experiences should be equally valued among commonly cited authors and scholars within institutions of higher education (IHEs). One path towards honoring these lived experiences is accomplished by highlighting them alongside those from groups considered predominant within Western-influenced, IHE scholarship.
Jálin B. Johnson, Nakisha Castillo, Natalie V. Nagthall and Hawani Negussie describe the unseen impacts of higher ed’s cultural taxation on minoritized faculty and eight steps to help diminish those impacts. (October, 2023)
“In this year alone, we have navigated the suffering surrounding mass shootings in our communities, publicized confrontations for human rights, social injustice, inhumane loss of life, and global tragedies, said Dr. Jálin B. Johnson, vice chancellor of equity and inclusion and senior diversity officer.
“It is important that as we advocate for equity, we also allow space for acknowledging trauma, the lived experiences of others, and the need for healing,” Johnson continued. “Equally as important, as I have reminded myself and others throughout the years, we must give ourselves grace.”
Thank you to the collaborators at #California#CEEDAR for inviting me to participate in their Critical Collaborations Series to discuss inclusive practices within the academy, guiding J.E.D.I. principles and innovative practices to advance advocacy work in IHEs. It was a pleasure to join our episode host Dr. Nicole Schneider and fellow esteemed panelists Dr. Nat Hansuvadha and Dr. Eric Engdahl. Thank you for all of the advocacy work you do in our communities. Supporting our students and modeling what it means to uplift our colleagues whose invisible labor, taxation, mentoring and community service, which can often go unnoticed, is valued and imperative.
“Throughout the year, we have the privilege of connecting, collaborating and supporting our team members from across the university,” said Jalin B. Johnson, vice chancellor of equity and inclusion. “The many conversations we have, and the efforts we partner on, serve as community centered reminders for the OEI team. Taking the time – year-round – to honor, remember, build, create supportive spaces, and listen is imperative to advocating for equity. This is a key part of how we interact with others, build our own personal awareness, and continue the process of both learning and unlearning, in addition to making space for wellness and healing.”
Members of University of Massachusetts Global’s faculty and staff spend countless hours helping students get closer to graduation, often finding this work satisfying and rewarding. Yet many among our ranks are also taking bold actions outside of work to make their neighborhoods and broader communities better places. With an eye toward sharing model stories on how colleagues can create a gentle balance between being a change agent while at work and at home, the Office of Equity and Inclusion (OEI) has launched the Advocating for Equity project.
“Throughout the year, we have the privilege of connecting, collaborating and supporting our team members from across the university,” said Jalin B. Johnson, vice chancellor of equity and inclusion. “The many conversations we have, and the efforts we partner on, serve as community centered reminders for the OEI team. Taking the time – year-round – to honor, remember, build, create supportive spaces, and listen is imperative to advocating for equity. This is a key part of how we interact with others, build our own personal awareness, and continue the process of both learning and unlearning, in addition to making space for wellness and healing.”
OEI is strongly encouraging submissions from faculty, staff, and students who would like to share their experiences. Stories that could be shared under the Advocating for Equity banner include accounts of personal service with organizations promoting social justice, organizations helping people who live with disabilities, resource and cultural centers, or faith-based or non-denominational groups. OEI is also interested in accounts of community happenings in which “extending equitable advocacy, support and resources for others, is the focal point.”
The desire to learn and grow one’s own understanding of the world and its wonders is an innately human urge. All people should have the chance to attend a supportive and welcoming school. Yet throughout its history, the American school system has failed to provide this opportunity to students from marginalized communities.
Recently, the importance of diversity and inclusion (D&I) in all spaces — including higher education — has been pushed to the forefront of the national consciousness. Institutions and organizations of all kinds have started new D&I initiatives and/or doubled down on existing efforts.
To better understand this critical work and why it is an essential part of a college education, we spoke with Hugo Yepez, director of strategic plan evaluation and assessment, and Dr. Jalin B. Johnson, vice chancellor of equity and inclusion, chief diversity officer and professor. Yepez and Dr. Johnson serve students through their work in the Office of Equity and Inclusion (OEI) at University of Massachusetts Global.
Recognizing an imperative to better prepare students for service in a multicultural and diverse nation, UMass Global social work faculty have spent two years engaging with the university’s Office of Equity and Inclusion to improve practices within their department. Professors and staff who have devoted their time to adding JEDI (Justice, Equity, Diversity, and Inclusion) concepts to the learning experience will soon discuss their work at the annual meeting of the Council on Social Work Education.
The convention, themed “Leading Critical Conversations: Human Rights are Global Rights,” is scheduled for Nov. 10 through 13 in Anaheim and will provide a venue for social work faculty and OEI staff to share the steps they have taken to enhance inclusivity within the Department of Social Work. These actions include updating student materials and a series of faculty retreats focused on discussions of antiracism.
“I’m always excited when we can see the efforts coming to fruition in settings outside the university … it’s good to see not only the work we’ve done in our university but also how it can impact other universities,” said Hugo Yepez, director of OEI strategic plan evaluation and assessment.
Faculty members Jeannine Meza, assistant professor of social work; Amber J. Ramirez, associate professor of social work, and Justine Rangel, assistant professor of social work, plan to lead a panel discussion during the November gathering. Yepez is also scheduled to join the presenters and Dr. Jalin B.Johnson, vice chancellor of equity and inclusion, and OEI staffer Jenny Park, equity and inclusion specialist, are set to participate by helping to respond to audience questions.
Meza, one of the faculty members involved in this effort, pointed to research showing U.S. social work students often graduate without obtaining sufficient knowledge of how to serve diverse clients. This realization inspired faculty members to enhance antiracist components of social work programs, discussing such resources, such as Ibram X. Kendi’s “How to be an Antiracist.”
“Through these conversations, we developed a better understanding of one another as faculty and staff,” Meza said. “We created a pool of resources to utilize for curriculum revisions to be an antiracist and antioppressive social work program. This will be our area of focus for 2022-23.”
The Council on Social Work Education’s anti-racism principles, as outlined in the body’s 2022 Educational and Accreditation Standards, are also informing the process of updating social work programs.
The Department of Social Work’s own Diversity, Equity, and Inclusion Committee formed prior to the 2020 creation of OEI, Johnson said. Social work faculty have since worked closely with OEI to update their department’s programs and practices.
This collaboration has resulted in updates to student handbooks and manuals involving such additions as gender-neutral language and anti-discrimination statements, as well as care to ensure that other materials referred to in the documents are accessible. OEI staffers are now engaged in similar work with additional academic departments and will be responsive to requests from others seeking to align their operations with best practices in diversity, equity, and inclusion.
“We always go where we’re invited, which is a wonderful thing,” Johnson said.
In December of 2020 – when first taking on the role of Vice Chancellor of Equity and Inclusion/Diversity Officer – the vision that was “OEI J.E.D.I Day” was but a seed. A hope for our community to come together and engage with one another surrounding discussions focused on justice, #equity, diversity and inclusion, held the promise of transformational change.
This MayThe4th – that vision of hope became a reality. It took collaboration, partnership, trust, altruism and advocacy. It was but for the tireless efforts of Hugo Yepez, M.Ed. and the unwavering support from Jenny Min Jung Park that this vision of hope was realized.
It is due to the time, passion, commitment, diversity of thought, and trust given by so many students, alumni, staff, faculty and administrators in our community, that the world’s first ever OEI J.E.D.I. Day was realized.
Presentation: Driving Institutional Change: Building Upon the Invisible Labor and Lived Experiences of Black, Minoritized, and Underrepresented Employees
We appreciated the opportunity to connect and engage with so very many members of the academy. Thank you to my fellow presenters and colleagues Dr. Nakisha Castillo and Dr. Hawani Negussie
