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 7R01MH134144-02. 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

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

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

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