Rectifying Disparities in Funding of Asian American, Native Hawaiian, and Pacific Islander Research by the US National Institutes of Health | Health Disparities | JAMA Network Open | JAMA Network
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Invited Commentary
Health Policy
July 24, 2019

Rectifying Disparities in Funding of Asian American, Native Hawaiian, and Pacific Islander Research by the US National Institutes of Health

Author Affiliations
  • 1School of Medicine, Division of Hematology and Oncology, Department of Internal Medicine, University of California, Davis Health System, Sacramento
JAMA Netw Open. 2019;2(7):e197561. doi:10.1001/jamanetworkopen.2019.7561

Asian American, Native Hawaiian, and Pacific Islander (AA/NHPI) is an artificial category for US citizens whose ancestry ranges across the vast continent of Asia, including the world’s most populous countries such as China and India, and people descended from indigenous island populations scattered across the world’s largest ocean, the Pacific. For example, the distance between Honolulu, Hawaii, and Guam requires 7 hours of air travel, compared with 5 hours of air travel between Washington, DC, and San Francisco, California. The heterogeneity of the AA/NHPI population defies simplistic characterization, as they speak hundreds of languages and dialects in their homes, reflect multiple cultures, and are further differentiated by their degrees of assimilation into mainstream American life. Consequently, while research to elucidate their health challenges should ideally be based on disaggregating AA/NHPI populations, investigators frequently must aggregate their data to derive findings that allow for comparison with other major US racial/ethnic populations.

Đoàn et al1 attempt to determine the level of investment by the US National Institutes of Health (NIH) to fund clinical research focused on AA/NHPI participants for fiscal years 1992 to 2018. Their findings were that the overall funding amounted to less than 0.2% of the NIH budget for 529 projects. These projects consisted of those that either addressed exclusively AA/NHPI individuals or AA/NHPI individuals with participants of other races and ethnicities. These findings are important and reflect both good news and bad news.

Based on eTable 2 in the article’s Supplement, the good news is that the dollar amount for total AAs/NHPI funding for fiscal 1992 was only $535 936 (0.01% of the NIH budget), while the funding in fiscal year 2018 was $52 909 714 (0.21% of the NIH budget). The increase in dollar amount as well as percentage of the NIH budget is considerable. The bad news is that despite the need for and value of funding AA/NHPI research, the percentage of the NIH budget remains considerably less than 1%.

The article by Đoàn et al1 is important because it methodologically tracked NIH funding for AA/NHPI research, detailed by institute or center, funding mechanisms, and grant titles. The authors chose not to determine “what proportion of NIH funding should be spent on racial/ethnic minority populations or what the research priorities should be.”1 However, as an NIH principal investigator who has received multiple types of funding for studies focused on AA/NHPI populations, I believe that there should be explicit criteria to determine the proportion of NIH funding priorities for AA/NHPI populations as well as for all racial/ethnic minority populations based on the proportion of the US population affected and the NIH criteria for assessing significance.

Funding research focused on racial/ethnic groups based on proportion of the US population benefiting follows logically from the mission of the NIH: “to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.”2 Based on that premise, AA/NHPI individuals, who composed 6.0% of the US population in 2018, should be the focus of at least 6.0% of the NIH budget.3 Additionally, if we cited the 2010 US Census, the Asian American and Hispanic populations have grown the most (43% since 2000).4 Logically speaking, these 2 racial/ethnic population groups should experience a corresponding increase of the NIH budget, but they have not. Altogether, racial/ethnic minorities (Hispanic, 18.1%; black, 13.4%; American Indian/Alaska Native, 1.3%; AA/NHPI, 6.0%) who made up 38.8% of the 2018 US population3 should be the primary beneficiaries of 38.8% of the NIH budget. But they are not.

Other examples of disparities in funding that affect racial/ethnic minorities include the lower participation of black and Hispanic participants in cancer clinical trials compared with the cancer prevalence in these groups,5 as well as the very small proportion of cancer clinical trials (<2%) that have as their primary focus any racial/ethnic minorities. In January 2013, of at least 10 000 cancer clinical trials registered in ClinicalTrials.gov, only 83 trials listed the black population as a primary focus; 32, Hispanic; 5, Asian American; 4, Native American; 2, American Indian; 2, Alaska Native; and 1, Pacific Islander.6 The numbers are even fewer by specific race6 and are incompatible with the goal of precision medicine. It should not be a surprise that this paucity of tailored trials stifles efficacy and applicability to benefit racial/ethnic minorities.6 If research on the diseases that disproportionately affect AA/NHPI individuals are underfunded, as with cancers of infectious origin, the gaps in research prioritization are exacerbated even more. Ignoring sufficient participation by ethnicity not only represents missed scientific opportunities but also implies a disregard for justice as citizens of a democratic republic.7

A US Census–based perspective in evaluating the allocation of the NIH budget may be perceived as a radical proposal, but it is no different from how Congressional representation is determined. With proportionality of the US population as a basis, the application of the NIH review criteria for significance should then be used to judge research proposals. Those questions are the following: (1) Does the project address an important problem or a critical barrier to progress in the field? (2) Is the prior research that serves as the key support for the proposed project rigorous? (3) If the aims of the project are achieved, how will scientific knowledge, technical capability, and/or clinical practice be improved? (4) How will successful completion of the aims change the concepts, methods, technologies, treatments, services, or preventative interventions that drive this field?

Merging proportionality with significance is my recommended yardstick for determining how NIH funding should be evaluated, not just for AA/NHPI groups but for all racial/ethnic minority populations. Such an approach has much greater potential to “enhance health, lengthen life, and reduce illness and disability”2 because it is people centered and ensures that an organization with considerable health research talent and resources can more meaningfully address its mission with fairness and impact.

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Article Information

Published: July 24, 2019. doi:10.1001/jamanetworkopen.2019.7561

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2019 Chen MS Jr. JAMA Network Open.

Corresponding Author: Moon S. Chen Jr, PhD, MPH, School of Medicine, Division of Hematology and Oncology, Department of Internal Medicine, University of California, Davis Health System, 4501 X St, Ste 3016, Sacramento, CA 95817 (mschenjr@ucdavis.edu).

Conflict of Interest Disclosures: None reported.

References
1.
Đoàn  LN, Takata  Y, Sakuma  K-LK, Irvin  VL.  Trends in clinical research including Asian American, Native Hawaiian, and Pacific Islander participants funded by the US National Institutes of Health, 1992 to 2018.  JAMA Netw Open. 2019;2(7):e197432. doi:10.1001/jamanetworkopen.2019.7432Google Scholar
2.
National Institutes of Health. Mission and goals. https://www.nih.gov/about-nih/what-we-do/mission-goals. Accessed June 6, 2019.
3.
US Census Bureau. Quick facts: United States. https://www.census.gov/quickfacts/fact/table/US. Accessed June 6, 2019.
4.
Humes  KR, Jones  NA, Ramirez  RR. Overview of race and Hispanic origin: 2010 Census briefs. https://www.census.gov/prod/cen2010/briefs/c2010br-02.pdf. Accessed June 6, 2019.
5.
Duma  N, Vera Aguilera  J, Paludo  J,  et al.  Representation of minorities and women in oncology clinical trials: review of the past 14 years.  J Oncol Pract. 2018;14(1):e1-e10. doi:10.1200/JOP.2017.025288PubMedGoogle ScholarCrossref
6.
Chen  MS  Jr, Lara  PN, Dang  JH, Paterniti  DA, Kelly  K.  Twenty years post-NIH Revitalization Act: enhancing minority participation in clinical trials (EMPaCT): laying the groundwork for improving minority clinical trial accrual: renewing the case for enhancing minority participation in cancer clinical trials.  Cancer. 2014;120(suppl 7):1091-1096. doi:10.1002/cncr.28575PubMedGoogle ScholarCrossref
7.
Oh  SS, Galanter  J, Thakur  N,  et al.  Diversity in clinical and biomedical research: a promise yet to be fulfilled.  PLoS Med. 2015;12(12):e1001918. doi:10.1371/journal.pmed.1001918PubMedGoogle ScholarCrossref
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