What Research Is Done?

Research concerning diseases that primarily affect marginalized US populations are underfunded and understudied. Farooq reported that research funding related to sickle cell disease (SSD), the most common monogenic disease in the USA, amounts to under $1000/affected person, while cystic fibrosis (CF) funding (the most common monogenic disease among White Americans) is over $10,000/person. Research investment matters: individuals with CF have new treatments and near-normal life expectancy, while advances in treatment for SSD and life expectancy have lagged [Reference Farooq, Mogayzel, Lanzkron, Haywood and Strouse5].

Examples of inequitable funding abound: research on triple-negative breast cancer, common among African American women, is relatively underfunded. At least 200,000 US adults, primarily Black and Latina women, have Systemic Lupus Erythematosus; however, in 2021 NIH set aside less than $900/affected person. Firearms injuries, the leading cause of death in children and adolescents [Reference Goldstick, Cunningham and Carter6,Reference Lee, Douglas and Hemenway7], disproportionately affect young Black men, but until recently federal law effectively prohibited public health studies to reduce firearms injuries.

Who Does the Research and How Is It Funded?

Underrepresentation of Black scientists may underlie the problems in studying issues relevant to Black Americans. Black investigators account for only about 2% of NIH-funded Principal Investigators.

Felicia Marie Knaul, economist and researcher of global health and breast cancer, points to research funding fueled by distinct personal interest and siloed fundraising resulting in missed opportunities to address systemic issues [8].

Hoppe noted 3 problem areas that lead to disparate peer-review outcomes: decision to discuss, impact score assignment, and topic choice [Reference Hoppe, Litovitz and Willis9]. Black applicants chose topics such as community and population health that receive lower award rates than investigator-initiated proposals at earlier translational stages. Study sections, drawn from the ranks of funded investigator, may have less enthusiasm for research focused on minoritized communities or relevance to public health or health disparities.

Research Participation

Clinical research involves the participation of affected individuals. Black Americans are far less likely to enroll in research trials than would be expected based on disease prevalence [Reference Loree, Anand and Dasari10]. Although better framing of randomized controlled trials and medical professional training may help [Reference Jull, Whitehead and Petticrew11,Reference Wanty, Cooper and Simkus12], the distrust of research may be well justified. Recent papers have suggested that Black and White research participants are treated differently within the same trials [Reference Odugbesan, Addala and Nelson13].

A Pathway to Equity through Translational Research Redesign

Clinical translational science can diversify research teams, match research priorities with health needs, improve diverse research participation, and follow guidelines for results reporting.

This perspective echoes a recent NAM Perspective plan of action for dismantling racism in the research endeavor [Reference Beard, Iruka, Laraque-Arena, McBride Murry, Rodríguez and Taylor16]. The recommendations are anchored on the principle of addressing leading causes of death throughout the life course and the training of medical professionals in socially accountable, competency-based educational models [Reference Goldstick, Cunningham and Carter6,Reference Lee, Douglas and Hemenway7,Reference Laraque-Arena, Etzel, Laraque-Arena, Germain, Young and Laraque-Ho17,Reference Halfon, Russ and Kahn18]. The lack of diversity in the entire research workforce can be addressed through programs that improve access to careers as independent investigators and engage community residents as co-researchers [Reference Bogard, Ortiz-Cortes, Taylor, Jackson and Belmonte19].

Addressing the Urgent Need for Change