Clinical Trials
Representation in Clinical Trials
- Are Racial and Ethnic Minorities Less Willing to Participate in Health Research?Wendler D, Kington R, Madans J, Van Wye G, Christ-Schmidt H, Pratt LA, Brawley OW, Gross CP, Emanuel E. Are racial and ethnic minorities less willing to participate in health research? PLoS Med. 2006;3(2):e19. DOI: 10.1371/journal.pmed.0030019
- The More Things Change, the More They Stay the Same: A Study to Evaluate Compliance with Inclusion and Assessment of Women and Minorities in Randomized Controlled TrialsGeller SE, Koch AR, Roesch P, Filut A, Hallgren E, Carnes M. The more things change, the more they stay the same: A study to evaluate compliance with inclusion and assessment of women and minorities in randomized controlled trials. Acad Med. 2018;93(4):630-635. DOI: 10.1097/ACM.0000000000002027
- Representation of Lesbian, Gay, and Bisexual People in Clinical Cancer TrialsJabson JM, Blosnich JR. Representation of lesbian, gay, and bisexual people in clinical cancer trials. Ann Epidemiol. 2012;22(11):821-823. DOI: 10.1016/j.annepidem.2012.08.006
- Sex, Racial, and Ethnic Disparities in U.S. Cardiovascular Trials in More Than 230,000 PatientsPreventza O, Critsinelis A, Simpson K, Olive JK, LeMaire SA, Cornwell LD, Jimenez E, Byrne J, Chatterjee S, Rosengart TK, Coselli JS. Sex, racial, and ethnic disparities in U.S. cardiovascular trials in more than 230,000 patients. Ann Thorac Surg. 2021;112(3):726-735. DOI: 10.1016/j.athoracsur.2020.08.075
- A Systematic Review of Barriers and Facilitators to Minority Research Participation Among Africans, Latinos, Asian Americans, and Pacific IslandersGeorge S, Duran N, Norris K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. Am J Public Health. 2014;104(2):e16-e31. DOI: 10.2105/ajph.2013.301706
Increasing Diversity - Web Resources
- Improving Representation in Clinical Trials and Research2022 report from the National Academies of Science, Engineering, and Medicine.
Increasing Diversity - From the Literature
- Community-Engaged Approaches for Minority Recruitment Into Clinical ResearchWieland ML, Njeru JW, Alahdab F, Doubeni CA, Sia IG. Community-engaged approaches for minority recruitment into clinical research: A scoping review of the literature. Mayo Clin Proc. 2021;96(3):733-743. DOI: 10.1016/mayocp2020.03.028
- Enhancing Recruitment and Retention of Minority Populations for Clinical Research in Pulmonary, Critical Care, and Sleep MedicineThakur N, Lovinsky-Desir S, Appell D, Bime C, Castro L, Celedón JC, Ferreira J, George M, Mageto Y, Mainous AG III, Pakhale S, Riekert KA, Roman J, Ruvalcaba E, Sharma S, Shete P, Wisnivesky JP, Holguin F, on behalf of the American Thoracic Society Health Equity and Diversity Committee and the Assembly on Behavioral Science and Health Services Research. Enhancing recruitment and retention of minority populations for clinical research in pulmonary, critical care, and sleep medicine: An official American Thoracic Society research statement. Am J Respir Crit Care Med. 2021;204(3):e26-e50. DOI: 10.1164/rccm.202105-1210ST
- How Should Representation of Subjects with LEP Become More Equitable in Clinical Trials?Alhalel J, Francone N, Post S, O’Brian CA, Simon MA. How should representation of subjects with LEP become more equitable in clinical trials? AMA J Ethics. 2022;24(4):E319-E325. DOI: 10.1001/amajethics.2022.319
- Increasing Participation of Women in Cardiovascular TrialsCho L, Vest AR, O’Donoghue ML, Ogunniyi MO, Sarma AA, Denby KJ, Lau ES, Poole JE, Lindley KJ, Mehran R, Cardiovascular Disease in Women Committee Leadership Council. Increasing participation of women in cardiovascular trials: JACC Council perspectives. J Am Coll Cardiol. 2021;78(7):737-751. DOI: 10.1016/j.jacc.2021.06.022
- Patient-Centered Practices for Engaging Transgender and Gender Diverse Patients in Clinical Research StudiesAsquith A, Sava L, Harris AB, Radix AE, Pardee DJ, Reisner SL. Patient-centered practices for engaging transgender and gender diverse patients in clinical research studies. BMC Med Res Methodol. 2021;21(1):202. DOI: 10.1186/s12874-021-01328-4
- A Pilot Study of a Culturally-Appropriate, Educational Intervention to Increase Participation in Cancer Clinical Trials Among African Americans and LatinosCunningham-Erves J, Mayo-Gamble TL, Hull PC, Lu T, Barajas C, McAfee CR, Sanderson M, Canedo JR, Beard K, Wilkins CH. A pilot study of a culturally-appropriate, educational intervention to increase participation in cancer clinical trials among African Americans and Latinos. Cancer Causes Control. 2021;32(9):953-963. DOI: 10.1007/s10552-021-01449-7
- Promoting Inclusion in Clinical TrialsBodicoat DH, Routen AC, Willis A, Ekezie W, Gillies C, Lawson C, Yates T, Zaccardi F, Davies MJ, Khunti K. Promoting inclusion in clinical trials—A rapid review of the literature and recommendations for action. Trials. 2021;22:880. DOI: 10.1186/s13063-021-05849-7
- Recruitment and Retention Strategies Among Racial and Ethnic Minorities in Web-Based Intervention TrialsHwang DA, Lee A, Song JM, Han H-R. Recruitment and retention strategies among racial and ethnic minorities in web-based intervention trials: A retrospective qualitative analysis. J Med Internet Res. 2021;23(7):e23959. DOI: 10.2196/23959
- Strategies for Recruitment and Retention of Underrepresented Populations With Chronic Obstructive Pulmonary Disease for a Clinical TrialHuang B, De Vore D, Chirinos C, Wolf J, Low D, Willard-Grace R, Tsao S, Garvey C, Donesky D, Su G, Thom DH. Strategies for recruitment and retention of underrepresented populations with chronic obstructive pulmonary disease for a clinical trial. BMC Med Res Methodol. 2019;19:39. DOI: 10.1186/s12874-019-0679-y
- Successful Strategies for Practice-Based Recruitment of Racial and Ethnic Minority Pregnant Women in a Randomized Controlled TrialGoff SL, Youssef Y, Pekow PS, White KO, Guhn-Knight H, Lagu T, Mazor KM, Lindenauer PK. Successful strategies for practice-based recruitment of racial and ethnic minority pregnant women in a randomized controlled trial: The IDEAS for a Health Baby study. J Racial Ethn Health Disparities. 2016;3(4):731-737. DOI: 10.1007/s40615-015-0192-x
Methods and Frameworks
- A 'Treacherous Bind': Working With and Against Racial CategoriesGunaratnam Y. Chapter 2: A ‘treacherous bind’: Working with and against racial categories. In: Gunaratnam Y, Researching Race and Ethnicity (pp. 28-50). 2003; SAGE Publishing.
- The National Institute of Minority Health and Health Disparities Research FrameworkAlvidrez J, Castille D, Laude-Sharp M, Rosario A, Tabor D. The National Institute of Minority Health and Health Disparities research framework. Am J Public Health. 2019;109(1):S16-S20. DOI: 10.2105/AJPH.2018.304883
- Novel Approaches to Advance Minority Health and Health Disparities ResearchDuran DG, Pérez-Stable EJ. Novel approaches to advance minority health and health disparities research. Am J Public Health. 2019;109(1):S8-S10. DOI: 10.2105/AJPH.2018.304931
Ethical Considerations
Key Articles
- Considerations for Employing Intersectionality in Qualitative Health ResearchAbrams JA, Tabaac A, Jung S, Else-Quest NM. Considerations for employing intersectionality in qualitative health research. Soc Sci Med. 2020;258:113138. DOI: 10.1016/j.socscimed.2020.113138
- Ethical Issues in Health Research on Ethnic Minority Populations: Focusing on Inclusion and ExclusionBhopal R. Ethical issues in health research on ethnic minority populations: Focusing on inclusion and exclusion. Res Ethics. 2008;4(1):15-19.
Ebook
The Handbook of Ethical Research with Ethnocultural Populations and Communities by
What steps can be taken to incorporate a cultural perspective to the evaluation of research risks and benefits? How can investigators develop and implement respectful informed consent procedures in diverse cultural and language communities? What are ethical pitfalls and successful approaches to engaging in community and participant consultation? The Handbook of Ethical Research with Ethnocultural Populations and Communities, edited by Joseph E. Trimble and Celia B. Fisher, addresses these and other key questions in the first major work to focus specifically on ethical issues involving work with ethnocultural populations. Filling gaps and questions left unanswered by general rules of scientific conduct such as those embodied in federal regulations and professional codes, this Handbook will help guide ethical decision making for social and behavioral science research with multicultural groups for years to come. Key Features: Brings together for the first time a multidisciplinary blend of national leaders who specialize in the area of conducting research with ethnocultural populations Addresses existing issues at methodological, procedural, and conceptual levels for the responsible conduct of research in the field Incorporates as background a summary of leading research and scholarship on various topics framed within the authors′ personal successes, challenges, and failures in the dynamic process of creating a multicultural research ethic Includes real-world case examples to illustrate significant ethical principles in the research venture more concretely The Handbook is designed for graduate and advanced undergraduate students in Psychology and will also be valuable for social and medical science researchers and institutional review boards. This book will also be of interest to ethicists and bioethicists, policy makers, and foundations that fund research involving multicultural populations. .
ISBN: 9780761930433Publication Date: 2006
Data
Data Collection
- Collecting Race, Ethnicity, and Primary Language DataIssue brief from the Health Research & Educational Trust.
- Guidelines and Tips for Collecting Patient Data on Sexual Orientation and Gender IdentityAdvice from the LGBTQIA+ Health Education Center.
- Harmonizing Health Disparities MeasurementDuran D, Asada Y, Millum J, Gezmu M. Harmonizing health disparities measurement. Am J Public Health. 2019;109(S1):S25-S27. DOI: 10.2105/AJPH.2019.304952
- Measuring Sex, Gender Identity, and Sexual Orientation2022 report from the National Academies of Sciences, Engineering, and Medicine on the collection of data related to sex and gender.
Data Management and Reuse
- Aggregation of Asian-American Subgroups Masks Meaningful Differences in Health and Health Risks Among Asian EthnicitiesGordon NP, Lin TY, Rau J, Lo JC. Aggregation of Asian-American subgroups masks meaningful differences in health and health risks among Asian ethnicities: An electronic health record based cohort study. BMC Public Health. 2019;19:1551. DOI: 10.1186/s12889-019-7683-3
- Anti-Racism Data Reuse GuideAdvice for data reuse from the University of Michigan's Inter-University Consortium for Political and Social Research.
- Care Principles for Indigenous Data GovernanceFramework from the Global Indigenous Data Alliance on managing data about Indigenous peoples.
- Centering Racial Equity in Data UseWebinar from the Urban Institute.
- Data Equity: Six Steps Beyond Data DisaggregationKey components of data equity from the Hewlett Foundation.
- Data Walks: An Innovative Way to Share Data with CommunitiesReport and video from the Urban Institute on using data walks to share health data with communities.
- Ethnicity Data and AAPIs: Resources on Data DisaggregationInformation on disaggregating ethnicity data for Asian American and Pacific Islander Americans.
- Principles for Advancing Equitable Data PracticeAdvice for advancing data equity throughout the data life cycle from the Urban Institute.
- Tableau Data Equity HubData equity information and resources from software provider Tableau.
- Toolkit for Centering Racial Equity Within Data IntegrationResource from the Anne E. Casey Foundation on centering equity throughout the data life cycle.
- Where the Cloud Meets the Ground: Democratizing Health Data to Address Community Health EquityWebinar from the NIH on democratizing access to health data.
NIH Policies and Opportunities
- Inclusion of Women and Minorities as Participants in Research Involving Human SubjectsPolicy and resources on the inclusion of women and racialized people in research.
- Inclusion Across the LifespanPolicy and resources on the inclusion of children and older adults in research.
- Guidelines for the Review of Inclusion on the Basis of Sex/Gender, Race, Ethnicity, and Age in Clinical ResearchGuidelines for how NIH reviews inclusion in clinical research proposals.
- Active NIMHD Funding OpportunitiesFunding opportunities from the National Institute on Minority Health and Health Disparities.
- Conducting Research Through an Anti-Racism LensThis page is inspired by work done at the University of Minnesota's Health Sciences Library. See their guide for further reading and for advice on finding literature related to racism and stigma.
Scholarly Communication
Web Resources
- Anti-Racist Scholarly Reviewing PracticesHeuristic document on incorporating antiracism into academic reviewing compiled by various academics.
- Journals Online ProjectProject dedicated to improving and disseminating scholarly journals published in developing countries.
- On Racism: A New Standard for Publishing on Racial Health InequitiesArticle from the blog associated with the Health Affairs journal.
- The Racial Politics of CitationArticle from Inside Higher Ed.
Key Articles
- The Contested Meanings of Race and Ethnicity in Medical Research: A Case Study of the DynaMed Point of Care ToolSingh S, Steeves V. The contested meanings of race and ethnicity in medical research: A case study of the DynaMed Point of Care tool. Soc Sci Med. 2020;265:113112. DOI: 10.1016/j.socscimed.2020.113112
- Publication Bias Is the Consequence of a Lack of Diversity, Equity, and InclusionRouan J, Velazquez G, Freischlag J, Kibbe MR. Publication bias is the consequence of a lack of diversity, equity, and inclusion. J Vasc Surg. 2021;74(2S):111S-117S: DOI: 10.1016/j.jvs.2021.03.049
- Updated Guidance on the Reporting of Race and Ethnicity in Medical and Science JournalsFlanagin A, Frey T, Christiansen SL, AMA Manual of Style Committee. Updated guidance on the reporting of race and ethnicity in medical and science journals. JAMA. 2021;326(7):621-627. DOI: 10.1001/jama.2021.13304
- Uprooting Race-Based Assumptions in Biomedical Journal ArticlesAifah A, Onakomaiya D, Rakhra A, Ogedegb G. Uprooting race-based assumptions in biomedical journal articles. Trends Mol Med. 2021;27(9):830-832. DOI: 10.1016/j.molmed.2021.06.003
Community-Based Research
Web Resources
- CBPR Conceptual ModelConceptual model for CBPR from the University of New Mexico Health Sciences Center's Center for Participatory Research.
- Community-Based Participatory Research: A Partnership Approach for Public HealthFree CE course from the University of Michigan's Region V Public Health Training Center.
- Community-Based Participatory Research: A Strategy for Building Healthy Communities and Promoting Health through Policy ChangeBackground, promising practices, and policy relevance of CBPR from the School of Public Health at the University of California, Berkeley.
- Community-Centered Dissemination ToolkitToolkit from the University of Minnesota Medical School on disseminating the results of health research among communities.
- Index of Community Engagement TechniquesPresentation slides from the Tamarack Institute on various ways to engage communities.
- Participatory MethodsWebsite dedicated to participatory methods in research, from planning through dissemination.
- Three Models of Community-Based Participatory ResearchIssue brief from the Leonard Davis Institute of Health Economics.
Key Articles
- Barriers and Facilitators to Community-Based Participatory Mental Health Care Research for Racial and Ethnic MinoritiesDelman J, Progovac AM, Flomenhoft T, Delman D, Chambers V, Cook BL. Barriers and facilitators to community-based participatory mental health care research for racial and ethnic minorities. Health Aff (Millwood). 2019;38(3):391-398. DOI: 10.1377/hlthaff.2018.05040
- Community-Based Participatory Research and Integrated Knowledge TransitionJull J, Giles A, Graham ID. Community-based participatory research and integrated knowledge translation: Advancing the co-creation of knowledge. Implement Sci. 2017;12:150. DOI: 10.1186/s13012-017-0696-3
- Conversations About Community-Based Participatory Research and TrustBlacksher E, Nelson C, Van Dyke E, Echo-Hawk A, Bassett D, Buchwald D. Conversations about community-based participatory research and trust: “We are explorers together.” Prog Community Health Partnersh. 2016;10(2):305-309. DOI: 10.1353/cpr.2016.0039
- Dialogical Action: Moving from Community-Based to Community-Driven Participatory ResearchMontoya MJ, Kent EE. Dialogical action: Moving from community-based to community-driven participatory research. Qual Health Res. 2011;21(7):1000-1011. DOI: 10.1177/1049732311403500
Historical Context
Journal Article
- Genetic Research Among the Havasupai: A Cautionary TaleSterling RL. Genetic research among the Havasupai: A cautionary tale. Virtual Mentor. 2011;13(2):113-117. DOI: 10.1001/virtualmentor.2011.13.2.hlaw1-1102
Books
Examining Tuskegee: The Infamous Syphilis Study and Its Legacy by
The forty-year Tuskegee Syphilis Study, which took place in and around Tuskegee, Alabama, from the 1930s through the 1970s, has become a profound metaphor for medical racism, government malfeasance, and physician arrogance. Susan M. Reverby's Examining Tuskegee is a comprehensive analysis of the notorious study of untreated syphilis among African American men, who were told by U.S. Public Health Service doctors that they were being treated, not just watched, for their late-stage syphilis. With rigorous clarity, Reverby investigates the study and its aftermath from multiple perspectives and illuminates the reasons for its continued power and resonance in our collective memory.
Call Number: R853.H8 R48 2009 (Ekstrom)ISBN: 9780807898673Publication Date: 2009
The Immortal Life of Henrietta Lacks by
#1 NEW YORK TIMES BESTSELLER * "The story of modern medicine and bioethics--and, indeed, race relations--is refracted beautifully, and movingly."--Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE * ONE OF THE "MOST INFLUENTIAL" (CNN), "DEFINING" (LITHUB), AND "BEST" (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE * ONE OF ESSENCE'S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS * WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review * Entertainment Weekly * O: The Oprah Magazine * NPR * Financial Times * New York * Independent (U.K.) * Times (U.K.) * Publishers Weekly * Library Journal * Kirkus Reviews * Booklist * Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells--taken without her knowledge--became one of the most important tools in medicine: The first "immortal" human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb's effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta's family did not learn of her "immortality" until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family--past and present--is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family--especially Henrietta's daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn't her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
Call Number: W20.55 .E7 S55 2010 (Kornhauser) / RC265.6.L24 S55 2010 (Ekstrom)ISBN: 1400052173Publication Date: 2010
Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by
From the era of slavery to the present day, the first full history of black America’s shocking mistreatment as unwilling and unwitting experimental subjects at the hands of the medical establishment. Medical Apartheidis the first and only comprehensive history of medical experimentation on African Americans. Starting with the earliest encounters between black Americans and Western medical researchers and the racist pseudoscience that resulted, it details the ways both slaves and freedmen were used in hospitals for experiments conducted without their knowledge—a tradition that continues today within some black populations. It reveals how blacks have historically been prey to grave-robbing as well as unauthorized autopsies and dissections. Moving into the twentieth century, it shows how the pseudoscience of eugenics and social Darwinism was used to justify experimental exploitation and shoddy medical treatment of blacks, and the view that they were biologically inferior, oversexed, and unfit for adult responsibilities. Shocking new details about the government’s notorious Tuskegee experiment are revealed, as are similar, less-well-known medical atrocities conducted by the government, the armed forces, prisons, and private institutions. The product of years of prodigious research into medical journals and experimental reports long undisturbed,Medical Apartheidreveals the hidden underbelly of scientific research and makes possible, for the first time, an understanding of the roots of the African American health deficit. At last, it provides the fullest possible context for comprehending the behavioral fallout that has caused black Americans to view researchers—and indeed the whole medical establishment—with such deep distrust. No one concerned with issues of public health and racial justice can afford not to readMedical Apartheid, a masterful book that will stir up both controversy and long-needed debate.
Call Number: EbookISBN: 0385509936Publication Date: 2006
Medical Bondage: Race, Gender, and the Origins of American Gynecology by
The accomplishments of pioneering doctors such as John Peter Mettauer, James Marion Sims, and Nathan Bozeman are well documented. It is also no secret that these nineteenth-century gynecologists performed experimental caesarean sections, ovariotomies, and obstetric fistula repairs primarily on poor and powerless women. Medical Bondage breaks new ground by exploring how and why physicians denied these women their full humanity yet valued them as "medical superbodies" highly suited for medical experimentation. In Medical Bondage, Cooper Owens examines a wide range of scientific literature and less formal communications in which gynecologists created and disseminated medical fictions about their patients, such as their belief that black enslaved women could withstand pain better than white "ladies." Even as they were advancing medicine, these doctors were legitimizing, for decades to come, groundless theories related to whiteness and blackness, men and women, and the inferiority of other races or nationalities. Medical Bondage moves between southern plantations and northern urban centers to reveal how nineteenth-century American ideas about race, health, and status influenced doctor-patient relationships in sites of healing like slave cabins, medical colleges, and hospitals. It also retells the story of black enslaved women and of Irish immigrant women from the perspective of these exploited groups and thus restores for us a picture of their lives.
Call Number: EbookISBN: 9780820351346Publication Date: 2017
