Research SummaryMy research examines the socio-cultural and institutional dimensions of inequities in cancer care. As an anthropologist, I specialize in ethnographic approaches, but use a range of mixed qualitative and quantitative methods and community-based participatory research to investigate issues affecting vulnerable and medically underserved populations across the cancer continuum and in the context of the translation of new genomic technologies to clinical settings. My research program primarily focuses on 1) the translation of hereditary cancer services to underrepresented populations and under resourced settings and 2) the participation of vulnerable populations in cancer clinical research. In both these areas, I am particularly interested in identifying and addressing the challenges of effectively communicating with low-income, low-health literacy, and limited-English-proficient (LEP) populations in both clinical and community settings.
I am currently site PI/Co-Investigator on the CHARM (Cancer Health Assessments Reaching Many) study (MPI Goddard/Wilfond), one of the seven clinical project of the CSER consortium (funded by NHGRI, NCI and NIMHD). The Clinical Sequencing Evidence-Generating Research (CSER) consortium, now in its second funding cycle, is investigating the effectiveness of integrating genomic (exome or genome) sequencing into the clinical care of diverse and medically underserved individuals in a variety of healthcare settings and disease states. The goal of CHARM is to examine the utility of exome sequencing for cancer screening and how it affects care in diverse populations. My role includes leading the intervention development for a RCT comparing the ARIA genetic counseling model (Accessible, Relational, Inclusive, Actionable) and usual care genetic counseling for the return of exome sequence results with historically underserved patients. Also, for the CHARM study, I am leading the development and evaluation of an intervention to teach professional health care interpreters about exome sequencing, and to examine interpreters’ impact on the communication dynamic as well as LEP patient understanding and follow-up care.
I am also PI of the ELSI (ethical, legal social issues) study of the WISDOM trial, a pragmatic, preference sensitive RCT of risk-based breast cancer screening. This study is ethnographic and involves both empirical and normative bioethics methods to examine the ethical and social issues that arise in the context of precision population medicine (co-PI Barbara Koenig).
Most recently, I received funding with Dr. Kim Rhoads (MPI) for a study Mapping Mutographs and Epigenetic Changes in the Bayview Hunters Point Historical Cohort. This study combines CBPR, ethnographic and mapping methods to understand the relationship between a deeply toxic environment and the health of multigenerational African American families in the Bayview Hunters Point neighborhood.
- July 1, 2021 - December 31, 2022 - Patient and Physician Perspectives on Value, Utility and Implications of Recording Geographic Ancestry from Genomic Sequencing in the Electronic Health Record , MPI . Sponsor: Marcus Program ELSI in Precision Medicine Award, Sponsor Award ID:
- January 12, 2017 - December 31, 2021 - Precision Genomics in the WISDOM Pragmatic Clinical Trial: An Embedded ELSI Study of Risk-based Breast Cancer Screening , Principal Investigator . Sponsor: NIH, Sponsor Award ID: R01CA211999
- June 14, 2013 - May 31, 2021 - Exome sequencing in Diverse Populations in Colorado & Oregon , Co-Investigator . Sponsor: NIH, Sponsor Award ID: U01HG007292
- April 12, 2016 - March 31, 2021 - Comparison of 3 Modes of Genetic Counseling in High-Risk Public Hospital Patients , Co-Investigator . Sponsor: NIH, Sponsor Award ID: R01CA197784
Wesleyan University, Middletown, Connecticut, B.A., 1988, Anthropology
University of California, Santa Cruz, M.A., 1993, Cultural Anthropology
University of California, Santa Cruz, Ph.D., 1999, Cultural Anthropology
Yale University, Center for International & Area Studies, Post-Doctoral Fellowship, 2001, Migration, Globalization, & Citizenship
Honors & Awards
Graduate Fellowship Honorable Mention, National Science Foundation
Wenner-Gren Foundation for Anthropological Research Dissertation Research Fellowship
Spencer Foundation Dissertation Writing Fellowship
Advanced Studies Fellowship, Anthropology and Education Institute, Spencer Foundation
Best Published Paper Award Nomination, Asian/PI Caucus, American Public Health Association
Best Abstract, first-time presenter at Genomics Forum, American Public Health Association
Mentored Community-Academic Team, Community-Based Participatory Research for Health Equity Institute, NIMHHD (Grant # 1R13MD007620-01), San Francisco State University, San Francisco, CA
UCSF CORO Leadership Training Institute
National Society for Genetic Counselors Best Abstract Award: “Adapting Evidenced Based Strategies for Effective Communication in Cancer Genetic Counseling"
National Society for Genetic Counselors Best Trainee Paper Award for mentee Daniella Karmara, Journal of Genetic Counseling "Cancer counseling of low-income limited English proficient Latina women using medical interpreters: Implications for shared decision making"
- Mittendorf KF, Lewis HS, Duenas DM, Eubanks DJ, Gilmore MJ, Goddard KAB, Joseph G, Kauffman TL, Kraft SA, Lindberg NM, Reyes AA, Shuster E, Syngal S, Ukaegbu C, Zepp JM, Wilfond BS, Porter KM. Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews. Hered Cancer Clin Pract. 2022 Jun 10; 20(1):22. View on PubMed
- Ding L, Szymczak JE, Evans E, Canepa E, Martin AE, Contractor F, Aplenc R, Joseph G, Winestone LE. Factors that contribute to disparities in time to acute leukemia diagnosis in young people: an in depth qualitative interview study. BMC Cancer. 2022 May 12; 22(1):531. View on PubMed
- Amendola LM, Shuster E, Leo MC, Dorschner MO, Rolf BA, Shirts BH, Gilmore MJ, Okuyama S, Zepp JM, Kauffman TL, Mittendorf KF, Bellcross C, Jenkins CL, Joseph G, Riddle L, Syngal S, Ukaegbu C, Goddard KAB, Wilfond BS, Jarvik GP, CHARM Study. Laboratory-related outcomes from integrating an accessible delivery model for hereditary cancer risk assessment and genetic testing in populations with barriers to access. Genet Med. 2022 06; 24(6):1196-1205. View on PubMed
- O'Daniel JM, Ackerman S, Desrosiers LR, Rego S, Knight SJ, Mollison L, Byfield G, Anderson KP, Danila MI, Horowitz CR, Joseph G, Lamoure G, Lindberg NM, McMullen CK, Mittendorf KF, Ramos MA, Robinson M, Sillari C, Madden EB, CSER Stakeholder and Engagement Work Group. Integration of stakeholder engagement from development to dissemination in genomic medicine research: Approaches and outcomes from the CSER Consortium. Genet Med. 2022 05; 24(5):1108-1119. View on PubMed
- Riddle L, Karliner LS, Livaudais-Toman J, Guerra C, Roat CE, Rope AF, Wade A, Caruncho M, Zepp JM, Giang J, Wilfond BS, Joseph G. Development and evaluation of an exome sequencing training course for medical interpreters. Per Med. 2022 03; 19(2):125-138. View on PubMed
- Chan H, Van Loon K, Kenfield SA, Chan JM, Mitchell E, Zhang L, Paciorek A, Joseph G, Laffan A, Atreya C, Fukuoka Y, Miaskowski C, Meyerhardt JA, Venook AP, Van Blarigan EL. Quality of life of colorectal cancer survivors participating in a pilot randomized controlled trial of physical activity trackers and daily text messages. Support Care Cancer. 2022 May; 30(5):4557-4564. View on PubMed
- Mittendorf KF, Kauffman TL, Amendola LM, Anderson KP, Biesecker BB, Dorschner MO, Duenas DM, Eubanks DJ, Feigelson HS, Gilmore MJ, Hunter JE, Joseph G, Kraft SA, Lee SSJ, Leo MC, Liles EG, Lindberg NM, Muessig KR, Okuyama S, Porter KM, Riddle LS, Rolf BA, Rope AF, Zepp JM, Jarvik GP, Wilfond BS, Goddard KAB, CHARM study team. Corrigendum to "Cancer Health Assessments Reaching Many (CHARM): A clinical trial assessing a multimodal cancer genetics services delivery program and its impact on diverse populations" [Contemporary Clinical Trials 106 (2021) 106432]. Contemp Clin Trials. 2022 Mar; 114:106682. View on PubMed
- Mittendorf KF, Knerr S, Kauffman TL, Lindberg NM, Anderson KP, Feigelson HS, Gilmore MJ, Hunter JE, Joseph G, Kraft SA, Zepp JM, Syngal S, Wilfond BS, Goddard KAB. Systemic Barriers to Risk-Reducing Interventions for Hereditary Cancer Syndromes: Implications for Health Care Inequities. JCO Precis Oncol. 2021; 5. View on PubMed
- James JE, Riddle L, Koenig BA, Joseph G. The limits of personalization in precision medicine: Polygenic risk scores and racial categorization in a precision breast cancer screening trial. PLoS One. 2021; 16(10):e0258571. View on PubMed
- Lee R, Frick M, Joseph G, Guerra C, Stewart S, Kaplan C, Dixit N, Tsoh JY, Flores S, Pasick RJ. Research to reduce inequities in cancer risk services: Insights for remote genetic counseling in a pandemic and beyond. J Genet Couns. 2021 10; 30(5):1292-1297. View on PubMed
- Lindberg NM, Gutierrez AM, Mittendorf KF, Ramos MA, Anguiano B, Angelo F, Joseph G. Creating accessible Spanish language materials for Clinical Sequencing Evidence-Generating Research consortium genomic projects: challenges and lessons learned. Per Med. 2021 09; 18(5):441-454. View on PubMed
- Almeida R, Lopez-Macha A, Dugatkin T, Joseph G, Duron Y, Hurtado de Mendoza A, D Graves K, Fejerman L. Community research collaboration to develop a promotores-based hereditary breast cancer education program for Spanish-speaking Latinas. Health Educ Res. 2021 07 12; 36(3):319-336. View on PubMed
- Mittendorf KF, Kauffman TL, Amendola LM, Anderson KP, Biesecker BB, Dorschner MO, Duenas DM, Eubanks DJ, Feigelson HS, Gilmore MJ, Hunter JE, Joseph G, Kraft SA, Lee SSJ, Leo MC, Liles EG, Lindberg NM, Muessig KR, Okuyama S, Porter KM, Riddle LS, Rolf BA, Rope AF, Zepp JM, Jarvik GP, Wilfond BS, Goddard KAB, CHARM study team. Cancer Health Assessments Reaching Many (CHARM): A clinical trial assessing a multimodal cancer genetics services delivery program and its impact on diverse populations. Contemp Clin Trials. 2021 07; 106:106432. View on PubMed
- Laura Amendola, Sabrina A. Suckiel, Julianne O’Daniel, Katherine Donohue, Katie Gallagher, Marian Gilmore, Laura Hendon, Galen Joseph, Billie Lianoglou, Jennifer M. Mathews, Mary Norton, Jaqueline Ogdis, Alexis Poss, Shannon Rego, Sarah Scollon, Tiffany Yip. eP317 Genomic sequencing results disclosure in diverse and underserved populations: themes, challenges and strategies from the CSER Consortium. Molecular Genetics and Metabolism. 2021 Apr 1; 132:s201-s203. View on PubMed
- Suckiel SA, O'Daniel JM, Donohue KE, Gallagher KM, Gilmore MJ, Hendon LG, Joseph G, Lianoglou BR, Mathews JM, Norton ME, Odgis JA, Poss AF, Rego S, Scollon S, Yip T, Amendola LM. Genomic Sequencing Results Disclosure in Diverse and Medically Underserved Populations: Themes, Challenges, and Strategies from the CSER Consortium. J Pers Med. 2021 Mar 13; 11(3). View on PubMed
- Riddle L, Amendola LM, Gilmore MJ, Guerra C, Biesecker B, Kauffman TL, Anderson K, Rope AF, Leo MC, Caruncho M, Jarvik GP, Wilfond B, Goddard KAB, Joseph G. Development and early implementation of an Accessible, Relational, Inclusive and Actionable approach to genetic counseling: The ARIA model. Patient Educ Couns. 2021 05; 104(5):969-978. View on PubMed
- Biesecker BB, Lillie SE, Amendola LM, Donohue KE, East KM, Foreman AKM, Gilmore MJ, Greve V, Liangolou B, O'Daniel JM, Odgis JA, Rego S, Rolf B, Scollon S, Suckiel SA, Zepp J, Joseph G. A review and definition of 'usual care' in genetic counseling trials to standardize use in research. J Genet Couns. 2021 02; 30(1):42-50. View on PubMed
- Goddard KAB, Angelo FAN, Ackerman SL, Berg JS, Biesecker BB, Danila MI, East KM, Hindorff LA, Horowitz CR, Hunter JE, Joseph G, Knight SJ, McGuire A, Muessig KR, Ou J, Outram S, Rahn EJ, Ramos MA, Rini C, Robinson JO, Smith HS, Waltz M, Lee SS. Lessons learned about harmonizing survey measures for the CSER consortium. J Clin Transl Sci. 2020 Apr 24; 4(6):537-546. View on PubMed
- Kraft SA, McMullen C, Lindberg NM, Bui D, Shipman K, Anderson K, Joseph G, Duenas DM, Porter KM, Kauffman TL, Koomas A, Ransom CL, Jackson P, Goddard KAB, Wilfond BS, Lee SS. Integrating stakeholder feedback in translational genomics research: an ethnographic analysis of a study protocol's evolution. Genet Med. 2020 06; 22(6):1094-1101. View on PubMed
- Van Blarigan EL, Chan H, Van Loon K, Kenfield SA, Chan JM, Mitchell E, Zhang L, Paciorek A, Joseph G, Laffan A, Atreya CE, Fukuoka Y, Miaskowski C, Meyerhardt JA, Venook AP. Self-monitoring and reminder text messages to increase physical activity in colorectal cancer survivors (Smart Pace): a pilot randomized controlled trial. BMC Cancer. 2019 Mar 11; 19(1):218. View on PubMed