Susan Brown Trinidad, MA, PhD
Sue Trinidad is an Assistant Professor in the Department of Bioethics and Humanities, having served as a Research Scientist from 2005-2022. She is the co-Principal Investigator of an NIAID-funded grant, Alaska Native People Advancing Vaccine Uptake, which will use peer-to-peer outreach, education, and motivational interviewing to increase COVID-19 vaccination among Alaska Native and American Indian people in Alaska. She has conducted empirical bioethics work concerning the ethical, legal, and social implications (ELSI) of genomic research and medicine for several large national consortia including the eMERGE Network, the PGRN Network, the CSER Consortium, and two Centers of Excellence in ELSI Research, the Center for Genomics and Healthcare Equality (CGHE) at UW and the Center for the Ethics of Indigenous Genomic Research (CEIGR) at the University of Oklahoma. Special interests include the dynamics and ethics of equitable collaboration in health research; patient-centered communication and medical decision-making; and bringing under-represented perspectives into policy discussions. A white settler scholar, Dr. Trinidad supports Tribal sovereignty and the right of Indigenous peoples to self-determination. She has had the privilege of working with several Alaska Native and American Indian communities. She served on the UW Institutional Review Board from 2009-2014.
Dr. Trinidad holds a PhD in educational psychology (Learning Sciences & Human Development) from UW, an MA from the Interdisciplinary Program in Health and Humanities at Michigan State University, and a BA in English from the College of William and Mary. She came to UW from an executive-level position in product development for companies specializing in telephone triage and disease management counseling.
Susan Brown Trinidad, MA, PhD
- Starks H, Trinidad SB. Choose your method: a comparison of phenomenology, discourse analysis, and grounded theory. Qual Health Res. 2007 Dec;17(10):1372-80.
- Trinidad SB, Fryer-Edwards K, Crest A, Kyler P, Lloyd-Puryear MA, Burke W. Educational needs in genetic medicine: primary care perspectives. Community Genet. 2008;11(3):160-5.
- Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EL, Burke W. Genomic research and wide data sharing: Views of prospective participants. Genet Med. 2010 Aug;12(8):486-95. PMCID: PMC3045967
- Lemke AA, Trinidad SB, Edwards KL, Starks H, Wiesner G. Attitudes toward genetic research review: Results from a national survey of professionals involved in human subjects protections. J Empir Res Hum Res Ethics. 2010 Mar;5(1):83-91. PMCID: PMC2902178
- Ludman EJ, Fullerton SM, Spangler L, Trinidad SB, Fujii MM, Jarvik GP, Larson EB, Burke W. Glad you asked: Participants’ opinions of re-consent for dbGaP submission. J Empir Res Hum Res Ethics. 2010 Sep;5(3):9-16. PMCID: PMC3071850
- Clayton EW, Smith M, Fullerton SM, Burke W, McCarty CA, Koenig BA, McGuire AL, Beskow LM, Dressler L, Lemke AA, Ramos EM, Rodriguez LL; Consent and Community Consultation Working Group of the eMERGE Consortium. Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium. Genet Med. 2010 Oct;12(10):616-20. PMCID: PMC3090678
- Gaster B, Edwards K, Trinidad SB, Gallagher TH, Braddock CH. Patient-centered discussions about prostate cancer screening: A real-world approach. Ann Intern Med. 2010 Nov 16;153(10):661-5. PMCID: PMC3065982
- Trinidad SB, Fullerton SM, Ludman EJ, Jarvik GP, Larson EB, Burke W. Research practice and participant preferences: the growing gulf. Science. 2011 Jan 21;331(6015):287- PMCID: PMC3044500
- McCarty CA, Chisholm RL, Chute CG, Kullo IJ, Jarvik GP, Larson EB, Li R, Masys DR, Ritchie MD, Roden DM, Struewing JP, Wolf WA; eMERGE Team. The eMERGE Network: a consortium of biorepositories linked to electronic medical records data for conducting genomic studies. BMC Med Genomics. 2011 Jan 26;4:13. PMCID: PMC3038887
- Back AL, Trinidad SB, Hopley EK, Arnold RM, Baile WF, Edwards KA. What patients value when oncologists give news of cancer recurrence: commentary on specific moments in audiorecorded conversations. Oncologist. 2011 Feb;16(3):342-50. PMCID: PMC3228111
- Edwards KL, Lemke AA, Trinidad SB, Lewis SM, Starks H, Quinn Griffin MT, Wiesner GL, and the GRRIP Consortium. Attitudes toward genetic research review: Results from a survey of human genetics researchers. Public Health Genomics. 2011;14(6):337-45. PMCID: PMC3221257
- Trinidad SB, Fullerton SM, Ludman EJ, Jarvik GP, Larson EB, Burke W. The risks and benefits of re-consent (response). Science. 2011 Apr 15;332(6027):306. PMCID not required: letter, not peer reviewed
- Lemke AA, Smith ME, Wolf WA, Trinidad SB. Broad data sharing in genetic research: Views of institutional review board professionals. IRB: Ethics & Hum Rsch 2011 May-June;33(3):1-5. PMCID: PMC3394177
- Lemke AA, Wu JT, Waudby C, Pulley J, Somkin CP, Trinidad SB. Community engagement in biobanking: experiences from the eMERGE Network. Genomics, Society, and Policy Journal. 2010 /11;6(3):50-67. PMCID: PMC3434453
- Burke W, Trinidad SB. Systems medicine and the public’s health. Genome Med. 2011 Jul 27;3(7):47. PMCID: PMC3221550
- Edwards KL, Lemke AA, Trinidad SB, Lewis SM, Starks H, Snapinn KW, Griffin MQ, Wiesner GL, Burke W, and the GRRIP Consortium. Genetics researchers’ and IRB professionals’ attitudes toward genetic research review: A comparative analysis. Genet Med. 2012 Feb;14(2):236-42). PMCID: PMC3448270
- Dressler LG, Smolek S, Ponsaran R, Markey JM, Starks H, Gerson N, Lewis S, Press N, Juengst E, Wiesner GL; GRRIP Consortium. IRB perspectives on the return of individual results from genomic research. Genet Med. 2012 Feb;14(2):215-22. PMCID: PMC3493147
- Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W. Informed consent in genome-scale research: what do prospective participants think? AJOB Prim Res. 2012 Jul;3(3):3-11. PMCID: PMC3593675
- Kelley MC, Trinidad SB. Silent loss and the clinical encounter: Parents' and physicians' experiences of stillbirth—a qualitative analysis. BMC Pregnancy Childbirth. 2012 Nov 27;12:137. PMCID: PMC3533522
- Hoeft TJ, Burke W, Hopkins SE, Charles SW, Trinidad SB, James RD, Boyer BB. Building partnerships in community-based participatory research: budgetary and other cost considerations. Health Promot Pract. 2014 Mar; 15(2): 263–270. PMCID: PMC3778064
- Bennette CS, Trinidad SB, Fullerton SM, Patrick D, Amendola L, Burke W, Hisama FM, Jarvik GP, Regier DA, Veenstra DL. Return of incidental findings in genomic medicine: measuring what patients value -- development of an instrument to measure preferences for information from next-generation testing (IMPRINT).Genet Med. 2013 Nov;15(11):873-8. PMCID: PMC3823641
- Burke W, Trinidad SB, Clayton EW. Seeking genomic knowledge: the case for clinical restraint. Hastings Law J. 2013 Aug; 64(6):1649-1663. PMCID: PMC3969739
- Hartzler A, McCarty CA, Rasmussen LV, Williams MS, Brilliant M, Bowton EA, Clayton EW, Faucett WA, Ferryman K, Field JR, Fullerton SM, Horowitz CR, Koenig BA, McCormick J, Ralston JD, Sanderson SC, Smith ME, Trinidad SB. Engaging stakeholders in informatics to integrate genomic information into the electronic health record (EHR): experiences from the eMERGE Network. Genet Med. 2013 Sep;15(10):792-801. PMCID: PMC3909653
- James RD, Gold DE, St John-Blackbird A, Trinidad SB. Factors that Influence mammography use among older American Indian and Alaska Native women. J Transcult Nurs. 2015 Mar;26(2):137-45. PMCID: PMC4163127.
- James R, Tsosie R, Sahota P, Parker M, Dillard D, Sylvester I, Lewis J, Klejka J, Muzquiz L, Olsen P, Whitener R, Burke W; Kiana Group. (2014). Exploring pathways to trust: a tribal perspective on data sharing. Genet Med. 2014 Nov;16(11):820-6. PMCID: PMC4224626
- Back AL, Trinidad SB, Hopley EK, Edwards KA. Reframing the goals of care conversation as necessary disruption: “We’re in a different place.” J Palliat Med. 2014 Sep;17(9):1019-24. PMCID: PMC4158951
- Gallego CJ, Bennette CS, Heagerty P, Comstock B, Horike-Pyne M, Hisama F, Amendola LM, Bennett RL, Dorschner MO, Tarczy-Hornoch P, Tarczy-Hornoch P, Grady WM, Fullerton SM, Trinidad SB, Regier DA, Nickerson DA, Burke W, Patrick DL, Jarvik GP, Veenstra DL. Comparative effectiveness of next generation genomic sequencing for disease diagnosis: Design of a randomized controlled trial in patients with colorectal cancer/polyposis syndromes. Contemp Clin Trials. 2014 Jul 3. pii: S1551-7144(14)00098-6. PMCID: PMC4175052
- Dorfman EH, Trinidad SB, Morales CT, Howlett K, Burke W, Woodahl EL. Pharmacogenomics in context: acceptability and feasibility in rural and tribal community settings. Pharmacogenomics. 2015;16(3):227-37. PMCID: PMC4360986
- Trinidad SB, Ludman EJ, Hopkins S, James RD, Hoeft TJ, Kinegak A, Lupie H, Kinegak R, Boyer BB, Burke W. Community dissemination and genetic research: moving beyond results reporting. Am J Med Genet A. 2015;167(7):1542-50. PMCID: PMC4478235
- Trinidad SB, Coffin TB, Fullerton SM, Ralston J, Jarvik GP, Larson EB. “Getting off the bus closer to your destination:” Patients’ views about pharmacogenetic testing. Perm J. 2015;19(3):21-7. PMCID: PMC4500477
- Amendola LM, Horike-Pyne M, Trinidad SB, Fullerton SM, Evans BJ, Burke W, Jarvik GP. Patients’ choices for return of exome sequencing results to relatives in the event of their death. J Law Med Ethics. 2015 Fall;43(3): 476-485. PMCID: PMC4617192
- Morales C, Muzquiz L, Azure B, Bodnar B, Finley V, Incashola T, Mathias C, Laukes C, Beatty P, Trinidad SB, James R, Burke W, Pershouse M, Putnam E, Woodahl E. Partnership with the Confederated Salish and Kootenai Tribes: establishing an advisory committee for pharmacogenetic research. Prog Community Health Partnersh, 2016 Summer;10(2):169-70. PMCID: PMC5015644
- Hiratsuka VY, Avey JP, Trinidad SB, Beans JA, Robinson RF. Views on electronic cigarette use in tobacco screening and cessation in an Alaska Native healthcare setting. Int J of Circumpolar Health. 2015;74:27794. PMCID: PMC4612470
- Avey JP, Hiratsuka VY, Trinidad SB, Tyndale RF, Robinson RF. Perceptions of pharmacogenetic research to guide tobacco cessation by patients, providers and leaders in a tribal healthcare setting. Pharmacogenomics. 2016; 17(4):405-15. PMCID: PMC5558512
- Hiratsuka VY, Trinidad SB, Avey J, Robinson RF. Application of the PEN-3 model on tobacco initiation, use, and cessation among American Indian and Alaska Native adults. Health Promot Pract. 2016 May 13; 17(4):471-81. PMCID pending.
- Goodman, JL, Amendola, LM, Horike-Pyne M, Trinidad SB, Fullerton SM, Burke W, Jarvik GP. Discordance in selected designee for return of genomic findings in the event of participant death and estate executor. Molecular Genetics & Genomic Medicine. 2017 Jan 16;5(2):172-176. PMCID: PMC5370224
- Pintye J, Beima-Sofie KM, Thuku G, Ngure K, Trinidad SB, Heffron R, Baeten JM, Mugo N, Bukusi EA, Kelley MC, John-Stewart GC. “I did not want to give birth to a child who has HIV:” Experiences using PrEP during pregnancy among HIV-uninfected Kenyan women in HIV-serodiscordant couples. J Acquir Immune Defic Syndr. 2017 Nov 1;76(3):259-265. PMCID: PMC5634917
- Ngure K, Trinidad SB, Beima-Sofie K, Baeten JM, Mugo NR, Bukusi EA, Heffron R, John-Stewart G, Kelley MC. The role of intimate partners in women’s participation in research during pregnancy: a case study from the Partners (PrEP) Demonstration Project. Reproductive Health. Dec 2017; 14(S3):DOI10.1186/s12978-017-0424-0.
- Burke W, Beskow LM, Trinidad SB, Fullerton SM, Brelsford K. Challenges to informed consent in translational genomic research: insufficient without trustworthy governance. J Law Med Ethics. . Mar 2018;46(1)::79-86. PMCID: PMC6023399
- Pintye J, Beima-Sofie KM, Akinyi P, Njoroge A, Trinidad SB, Heffron RA, Baeten JM, Celum C, Matemo D, Kinuthia J, Kelley MC, John-Stewart, GC. HIV-uninfected Kenyan adolescent and young women share perspectives on using preexposure prophylaxis during pregnancy. AIDS Patient Care and STDs. 2018 Jul 23. doi: 10.1089/apc.2018.0058 [epub ahead of print]
- Li M, Bennette CS, Amendola LM, Hart MR, Heagerty P, Comstock B, Tarczy-Hornoch P, Fullerton SM, Regier DA, Burke W, Trinidad SB, Jarvik GP, Veenstra DL, Patrick DL. The Feelings About genomic Testing Results (FACToR) Questionnaire: preliminary development and validation. J Genet Couns. 2018 Sep 1. doi: 10.1007/s10897-018-0286-9. [epub ahead of print]
- Beima-Sofie KM, Trinidad SB, Ngure K, Heffron R, Baeten J, John-Stewart GC, Kelley MC. Lessons from PrEP: how experts weigh ethics and evidence when evaluating HIV-prevention medications for use in pregnant women. AIDS Behav. AIDS Behav. 2019; 23(7): 1858–1870. PMCID: PMC6570782
- Trinidad SB, Shaw JL, Dirks L, Ludman EJ, Burke W, Dillard DA. Perceptions of alcohol misuse among Alaska Native healthcare system stakeholders: a qualitative exploration. J Ethn Subst Abuse. 2019 Feb 4:1-24. doi: 10.1080/15332640.2018.1556766. [epub ahead of print]
- Burke W, Trinidad SB, Schenck D. Can precision medicine reduce the burden of diabetes? Ethnicity & Disease special issue, Law, Genomic Medicine & Health Equity: How Can Law Support Genomics and Precision Medicine to Advance the Health of Underserved Populations? [accepted Aug 20, 2019]
Invited Talks (Selected)
- “ABCs of Genetics, DNA, and Related Research Issues,” panel presentation, Advancing Ethical Research, annual meeting of Public Responsibility in Medicine and Research, Baltimore, MD, December 5, 2014.
- “When Research Offends: Ethics, IRB Review, and the Risk of Stigma,” panel presentation on race and genetics, Advancing Ethical Research, annual meeting of Public Responsibility in Medicine and Research, Boston, MA, November 7, 2013.
- Kitsap Regional Library, One Book One Community program, book discussions and two public talks on The Immortal Life of Henrietta Lacks, Kitsap County, WA, multiple dates, October 2012.
- “The Immortal Life of Henrietta Lacks and the Evolution of Research Ethics,” public talk, Rotary International, Bainbridge Island, WA, January 28, 2013.
- “Introduction to Research Ethics,” Tribal Research Ethics Workshop, University of Washington, March 1, 2012.
- “Demystifying the Institutional Review Board,” webinar presented to members of Genetic Alliance, December 7, 2011.
- “Participant Protections in Genomic Research: Public Perspectives,” presented at Advancing Ethical Research, annual meeting of Public Responsibility in Medicine and Research, National Harbor, MD, December 3, 2011.
- “Reconsent in Genome-Scale Research: Implications for Engagement,” presented at the ELSI Congress, Chapel Hill, NC, April 13, 2011.
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