Bibliography on Community-Oriented Neuroscience Research

The bibliography will be updated regularly,and suggested additions can be sent to Dr. Francis Shen, fxshen@umn.edu

Acknowledgment: Research reported in this document was supported by the National Institute of Mental Health of the National Institutes of Health under Award Number R01MH134144. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Broadening the Neuroscience Workforce:

• Abiodun, S. J. (2019). “Seeing Color,” a discussion of the implications and applications of race in the field of neuroscience. Frontiers in Human Neuroscience, 13, 280. https://doi.org/10.3389/fnhum.2019.00280

• Beery, A. K., & Zucker, I. (2011). Sex bias in neuroscience and biomedical research. Neuroscience & Biobehavioral Reviews, 35(3), 565-572. https://doi.org/10.1016/j.neubiorev.2010.07.002

• Boyd, J. L., & Sugarman, J. (2022). Toward Responsible Public Engagement in Neuroethics. AJOB neuroscience, 13(2), 103-106. https://doi.org/10.1080/21507740.2022.2048736

• Dotson, V. M., & Duarte, A. (2020). The importance of diversity in cognitive neuroscience. Annals of the New York Academy of Sciences, 1464(1), 181-191. https://doi.org/10.1111/nyas.14268

• Falk, E. B., Hyde, L. W., Mitchell, C., Faul, J., Gonzalez, R., Heitzeg, M. M., ... & Schulenberg, J. (2013). What is a representative brain? Neuroscience meets population science. Proceedings of the National Academy of Sciences, 110(44), 17615-17622. https://doi.org/10.1073/pnas.1310134110

• Gau, R., Noble, S., Heuer, K., Bottenhorn, K. L., Bilgin, I. P., Yang., … Brainhack Community (2021). Brainhack: Developing a culture of open, inclusive, community-driven neuroscience. Neuron, 109(11), 1769–1775. https://doi.org/10.1016/j.neuron.2021.04.001

• Nketia, J., Amso, D., & Brito, N. H. (2021). Towards a more inclusive and equitable developmental cognitive neuroscience. Developmental Cognitive Neuroscience, 52, 101014. https://doi.org/10.1016/j.dcn.2021.101014

• Rollins, O. (2021). Towards an antiracist (neuro) science. Nature Human Behaviour, 5(5), 540-541.        10.1038/s41562-021-01075-y

• Joosten, Y. A., Israel, T. L., Williams, N. A., Boone, L. R., Schlundt, D. G.,  Mouton, C. P., ... & Wilkins, C. H. (2015). Community engagement studios:  a structured approach to obtaining meaningful input from stakeholders to inform research. Academic Medicine, 90(12), 1646        10.1097/ACM.0000000000000794    

Expanding Participation in Research and Clinical Trials:

• Areán PA, Gallagher-Thompson D. Issues and recommendations for the recruitment and retention of older ethnic minority adults into clinical research. J Consult Clin Psychol. 1996. ​​       10.1037//0022-006x.64.5.875

• Barnes, L. L. (2019). Biomarkers for Alzheimer dementia in diverse racial and ethnic minorities—a public health priority. JAMA neurology, 76(3), 251-253. https://doi.org/10.1001/jamaneurol.2018.3444

• Brewster, P., Barnes, L., Haan, M., Johnson, J. K., Manly, J., & Mungas, D. (2019).  Progress and future challenges in aging and diversity research in the United States. Alzheimer's & dementia : the journal of the Alzheimer's Association, 15(7), 995–1003.https://doi.org/10.1016/j.jalz.2018.07.221

• Cooper, R. S. (2013). Race in biological and biomedical research. Cold Spring Harbor perspectives in medicine, 3(11), a008573. https://doi.org/10.1101/cshperspect.a008573

• Coakley M, Fadiran EO, Parrish LJ, et al. Dialogues on diversifying clinical trials: successful strategies for engaging women and minorities in clinical trials.  Journal of Women’s Health. 2012;21:713-716.https://doi.org/10.1089/jwh.2012.3733

• Gilmore-Bykovskyi, A. L., Jin, Y., Gleason, C., Flowers-Benton, S., Block, L. M., Dilworth-Anderson, P., ... & Zuelsdorff, M. (2019). Recruitment and retention of underrepresented populations in Alzheimer's disease research: a systematic review. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 5, 751-770.  https://doi.org/10.1016/j.trci.2019.09.018

• Gleason, C. E., Norton, D., Zuelsdorff, M., Benton, S. F., Wyman, M. F., Nystrom, N., ... & Asthana, S. (2019). Association between enrollment factors and incident cognitive impairment in Blacks and Whites: data from the Alzheimer's Disease Center. Alzheimer's & Dementia, 15(12), 1533-1545. https://doi.org/10.1016/j.jalz.2019.07.015

• Gottesman, R. F., & Hamilton, R. (2021). Recruiting Diverse Populations in Clinical Trials: How Do We Overcome Selection Bias?. Neurology, 96(11), 509-510.  https://doi.org/10.1212/wnl.0000000000011639

• Indorewalla, K. K., O’Connor, M. K., Budson, A. E., & Jackson, J. (2021). Modifiable barriers for recruitment and retention of older adults participants from underrepresented minorities in Alzheimer’s disease research. Journal of Alzheimer's Disease, 80(3), 927-940.  https://doi.org/10.3233/jad-201081

• Mamlouk, G. M., Dorris, D. M., Barrett, L. R., & Meitzen, J. (2020). Sex bias and  omission in neuroscience research is influenced by research model and journal,  but not reported NIH funding. Frontiers in neuroendocrinology, 57, 100835.  https://doi.org/10.1016/j.yfrne.2020.100835

• Misiura, M. B., Butts, B., Hammerschlag, B., Munkombwe, C., Bird, A., Fyffe, M., Hemphill, A., Dotson, V. M., & Wharton, W. (2023). Intersectionality in Alzheimer's Disease: The Role of Female Sex and Black American Race in the Development and Prevalence of Alzheimer's Disease. Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics, 20(4), 1019–1036.        10.1007/s13311-023-01408-x

• Nápoles AM, Chadiha LA. Advancing the science of recruitment and retention of  ethnically diverse populations. Gerontologist. 2011. https://doi.org/10.1093/geront/gnr019

• Romero HR, Welsh-Bohmer KA, Gwyther LP, et al. Community engagement in diverse populations for alzheimer disease prevention trials. Alzheimer Dis Assoc Disord. 2014.  https://doi.org/10.1097/wad.0000000000000029

• Together We Make the Difference: National Strategy for Recruitment  and Participation in Alzheimer’s and Related Dementias Clinical Research.  (n.d.). 32. https://www.nia.nih.gov/research/grants-funding/ocr/recruitment-strategy

• Yancey, A. K., Ortega, A. N., & Kumanyika, S. K. (2006). Effective recruitment and retention of minority research participants. Annu. Rev. Public Health, 27, 1-28.https://doi.org/10.1146/annurev.publhealth.27.021405.102113

• La Scala, S., Mullins, J. L., Firat, R. B., Emotional Learning Research Community Advisory Board, & Michalska, K. J. (2023). Equity, diversity, and inclusion in developmental neuroscience: Practical lessons from community-based participatory research. Frontiers in integrative neuroscience, 16, 1007249. https://doi.org/10.3389/fnint.2022.1007249

Improving Access to Neuroimaging

• Brett, B. L., Schneider, J. A., & Aggarwal, N. T. (2021). Diversity in Aging-Related Neuroimaging Research. Practical Neurology. https://practicalneurology.com/articles/2021-feb/diversity-in-aging-related-neuroimaging-research

• Brain Scans for Everyone: Anticipating Ethical, Legal, and Social Implications (ELSI) and Equity, Diversity, and Inclusion (EDI) Challenges from Neuroimaging in the Real World, Harvard Law School Petrie-flom Center (Virtual) (2022).

• Eberhardt, J. L. (2005). Imaging race. American Psychologist, 60(2), 181. https://psycnet.apa.org/doi/10.1037/0003-066X.60.2.181 

• Harper, J., Evans, T. E., Obungoloch, J., & Adams, H. H. H. (2025). Improving access to global neuroimaging through locally sustained technology. Alzheimer's & Dementia, 20(Suppl 8), e094948. https://doi.org/10.1002/alz.094948

• Kwasa J. (2024). Untangling bias: Racial and phenotypic bias in neuroimaging methods must be addressed. Science (New York, N.Y.), 386(6722), 631–632. DOI: 10.1126/science.ads7375

• ​​Parasuram, N. R., Crawford, A. L., Mazurek, M. H., Chavva, I. R,..,(2023). Future of Neurology & Technology: Neuroimaging Made Accessible Using Low-Field, Portable MRI. Neurology, 100(22), 1067–1071. https://doi.org/10.1212/WNL.0000000000207074

• Shen, F., Wolf, S., Garwood, M., Han, D., Illes, J., Kimberly, W., ... & Vaughan, J. (2022). Challenges in Deploying Low-Field and Ultra-Low Field MRI in Research, Clinical Care, Population Screening, and Direct-to-Consumer Use (P15-7.001). https://doi.org/10.1212/WNL.98.18_supplement.586

• Harnett, N. G., Merrill, L. C., & Fani, N. (2024). Racial and ethnic socioenvironmental inequity and neuroimaging in psychiatry: a brief review of the past and recommendations for the future. Neuropsychopharmacology : official publication of the American College of Neuropsychopharmacology, 50(1), 3–15. https://doi.org/10.1038/s41386-024-01901-7

• Wu, K. C., Hong, S., Cross, F. L., Sypher, I., McLoyd, V. C., Huntley, E. D., Hyde, L. W., Mitchell, C., & Monk, C. S. (2024). Increasing diversity in neuroimaging research: Participant-driven recommendations from a qualitative study of an under-represented sample. Developmental cognitive neuroscience, 70, 101474. https://doi.org/10.1016/j.dcn.2024.101474

• Lim, A. C., Barnes, L. L., Weissberger, G. H., Lamar, M., Nguyen, A. L., Fenton, L., Herrera, J., & Han, S. D. (2023). Quantification of race/ethnicity representation in Alzheimer's disease neuroimaging research in the USA: a systematic review. Communications medicine, 3(1), 101. https://doi.org/10.1038/s43856-023-00333-6

• Garcini, L. M., Arredondo, M. M., Berry, O., Church, J. A., Fryberg, S., Thomason, M. E., & McLaughlin, K. A. (2022). Increasing diversity in developmental cognitive neuroscience: A roadmap for increasing representation in pediatric neuroimaging research. Developmental cognitive neuroscience, 58, 101167. https://doi.org/10.1016/j.dcn.2022.101167

Reporting Population Descriptors

• Byrd, D. A., & Rivera-Mindt, M. G. (2022). Neuropsychology’s race problem does not begin or end with demographically adjusted norms. Nature Reviews Neurology, 1-2 ​​https://doi.org/10.1038/s41582-021-00607-4

• Kaplan, J. B., & Bennett, T. (2003). Use of race and ethnicity in biomedical publication. Jama, 289(20), 2709-2716. https://doi.org/10.1001/jama.289.20.2709

• Risch, N., Burchard, E., Ziv, E., & Tang, H. (2002). Categorization of humans in biomedical research: genes, race and disease. Genome biology, 3(7), 1-12. https://doi.org/10.1186/gb-2002-3-7-comment2007

• Routen, A., Pareek, M., & Khunti, K. (2021). Reporting of race and ethnicity in medical and scientific journals. jama, 326(7), 674-674. https://doi.org/10.1001/jama.2021.9265

• Roberts, D. E. (2006). Legal constraints on the use of race in biomedical research: toward a social justice framework. Journal of Law, Medicine & Ethics, 34(3), 526-534. https://doi.org/10.1111/j.1748-720x.2006.00066.x

• Shen, Francis X. (2019). Is There an Ethical Duty to Report the Socioeconomic Status of Research Participants in Human Neuroscience Research?, Annual Mtg of the Society for Neuroscience (Chicago, IL).

• Smart, A., Tutton, R., Martin, P., Ellison, G. T., & Ashcroft, R. (2008). The standardization of race and ethnicity in biomedical science editorials and UK biobanks. Social Studies of Science, 38(3), 407-423. https://doi.org/10.1177/0306312707083759

• Sterling, E., Pearl, H., Liu, Z., Allen, J. W., & Fleischer, C. C. (2022). Demographic reporting across a decade of neuroimaging: a systematic review. Brain Imaging and Behavior, 1-12. https://doi.org/10.1007/s11682-022-00724-8

• Tutton, R. (2009). Biobanks and the inclusion of racial/ethnic minorities. Race/Ethnicity: Multidisciplinary Global Contexts, 75-95. 10.1353/rac.0.0031

• Winker, M. A. (2006). Race and ethnicity in medical research: requirements meet reality. The Journal of Law, Medicine & Ethics, 34(3), 520-525. https://doi.org/10.1111/j.1748-720x.2006.00065.x

• Weuve, J., Proust-Lima, C., Power, M. C., Gross, A. L., Hofer, S. M., Thiébaut, R., ... & MELODEM Initiative. (2015). Guidelines for reporting methodological challenges and evaluating potential bias in dementia research. Alzheimer's & dementia, 11(9), 1098-1109. 10.1016/j.jalz.2015.06.1885

• National Academies of Sciences, Engineering, and Medicine (2021). Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research. https://www.nationalacademies.org/our-work/use-of-race-ethnicity-and-ancestry-as-population-descriptors-in-genomics-research

• Heng, N. Y. W., & Rittman, T. (2023). Understanding ethnic diversity in open dementia neuroimaging data sets. Brain communications, 5(6), fcad308. https://doi.org/10.1093/braincomms/fcad308

Promoting Justice through Neuroscience Research and Neurotechnology

• Bhaskar S. M. M. (2023). An Equity and Justice-Informed Ethical Framework to Guide Incidental Findings in Brain Imaging Research. Clinics and practice, 13(1), 116–124. https://doi.org/10.3390/clinpract13010011

• Dobson, R., Kenten, C., Brown, J. et al. Moving towards meaningful patient and public engagement. Nat Rev Neurol 21, 121–122 (2025). https://doi.org/10.1038/s41582-025-01061-2

• Gilmore-Bykovskyi, A., Croff, R., Glover, C. M., Jackson, J. D., Resendez, J., Perez, A., ... & Manly, J. J. (2022). Traversing the aging research and health equity divide: Toward intersectional frameworks of research justice and participation. The Gerontologist, 62(5), 711-720.  https://doi.org/10.1093/geront/gnab107

• Horne, R., Phillips, R. & Rauf, M.A. Nothing about us, without us — establishing a patient and public involvement and engagement group. Nat Rev Neurol 21, 123–124 (2025). https://doi.org/10.1038/s41582-025-01063-0

• Webb, E. K., Cardenas-Iniguez, C., & Douglas, R. (2022). Radically reframing studies on neurobiology and socioeconomic circumstances: A call for social justice-oriented neuroscience. Frontiers in integrative neuroscience, 16, 958545. https://doi.org/10.3389/fnint.2022.958545