Joanna E. Bulkley, PhD

Joanna Bulkley, PhD, is a developmental psychologist and health care researcher who studies cancer survivorship and quality of life, genetics and genomics, health disparities, and women’s health. She has more than 25 years of experience applying a range of research methodologies, with a primary focus on observational and survey research, and has led the development and implementation of studies in diverse health areas.

Dr. Bulkley has extensive experience in team science and in directing large, multi-site network consortium projects. She was the project director of the CHARM study, one of the core projects of the Clinical Sequencing Evidence-Generating Research Consortium. She has conducted research within multiple large consortia funded by NCI, NHGRI, and PCORI, including the Patient Outcomes Research to Advance Learning (PORTAL) Network, National Cancer Institute Community Oncology Research Program (NCORP), and Cancer Research Network (CRN).

As the site principal investigator of the Clinical Genome Resource (ClinGen), Dr. Bulkley supervises the work of the Actionability Work Group evidence curation and administration teams. She is also chair of the ClinGen Justice, Equity, Diversity, and Inclusion Coordination Team and a member of the ClinGen Ancestry and Diversity Working Group.

Dr. Bulkley’s work in cancer survivorship combines survey and electronic health data to identify the unmet needs of colorectal and bladder cancer patients, focusing on survivors living with permanent alterations to their bodily functions resulting from colon, rectum, or bladder removal. Previously, she was principal investigator on two CDC-funded studies of maternal morbidity and was a research staff member on four others. Her other research has explored the experience of health care by post-menopausal women seen in primary care and gynecology and the economic impact to families of caring for their children’s health.

Dr. Bulkley received her MS and PhD in psychology from the University of Oregon. She joined CHR in 2007.

Selected Current Studies

• Clinical Genome Resource—ClinGen (NHGRI)
• Applying Population Management Best Practices to Preventive Genomic Medicine – HCS Care (NHGRI)
• Bladder Cancer Quality of Life (NCI)
• Cancer Health Assessments Reaching Many—CHARM (NIH)

Recent Publications

• Feigelson HS, Mittendorf KF, Okuyama S, Porter KM, Bulkley J, Shuster E, Anderson KP, Gilmore MJ, Zepp JM, Kauffman TL, Lindberg NM, Muessig KR, Bellcross C, Ukaegbu C, Syngal S, Leo MC, Wilfond BS, On Behalf of the Cancer Health Assessments Reaching Many (CHARM) Study, Feasibility of an electronic patient-facing cancer family history tool in medically underserved populations, Genetics in Medicine Open 2024. doi: https://doi.org/10.1016/ j.gimo.2024.101860.
• Pak CM, Gilmore MJ, Bulkley JE, Chakraborty P, Dagan-Rosenfeld O, Foreman AKM, Gollob MH, Jenkins CL, Katz AE, Lee K, Meeks N, O'Daniel JM, Posey JE, Rego SM, Shah N, Steiner RD, Stergachis AB, Subramanian SL, Trotter T, Wallace K, Williams MS, Goddard KAB, Buchanan AH, Manickam K, Powell B, Ezzell Hunter J; ClinGen Resource. Implementing evidence-based assertions of clinical actionability in the context of secondary findings: Updates from the ClinGen Actionability Working Group. Genet Med. 2024 Aug;26(8):101164. doi: 10.1016/j.gim.2024.101164. Epub 2024 May 14. PMID: 38757444; PMCID: PMC11298308.
• Gilmore MJ, Knerr S, Kraft SA, Bulkley JE, Biesecker BB, Feigelson HS, Hunter JE, Jenkins CL, Kauffman TL, Lee SS, Liles EG, Mittendorf KF, Muessig KR, Porter KM, Rolf BA, Rope AF, Zepp JM, Anderson KP, Devine B, Joseph G, Leo MC, Goddard K, Wilfond BS. Improving Care for Marginalized Populations at Risk for Hereditary Cancer Syndromes: Innovations that Expanded Reach in the CHARM Study. Public Health Genomics. 2024;27(1):16-22. doi: 10.1159/000535610. Epub 2023 Dec 23. PMID: 38142673.
• Lewis H, Biesecker B, Lee SS, Anderson K, Joseph G, Jenkins CL, Bulkley JE, Leo MC, Goddard KAB, Wilfond BS. Promoting equity, inclusion, and efficiency: A team science approach to the development of authorship guidelines for a multi-disciplinary research team. J Clin Transl Sci. 2023 Nov 30;7(1):e265. doi: 10.1017/cts.2023.685. PMID: 38229898; PMCID: PMC10790100.
• Okuyama S, White LL, Anderson KP, Medina E, Deutsch S, Ransom C, Jackson P, Kauffman TL, Mittendorf KF, Leo MC, Bulkley JE, Wilfond BS, Goddard KA, Feigelson HS. Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project. J Community Genet. 2023 Jun;14(3):329-336. doi: 10.1007/s12687-023-00647-x. Epub 2023 May 1. PMID: 37126135; PMCID: PMC10271961.
• Bulkley JE, Varga AM, Dickerson JF, Crawford P, Croen LA, Daida YG, Fombonne E, Hatch BA, Lee A, Massolo M, Vaughn K, Lynch FL. A framework for measuring the cost to families of caring for children’s health: the design, methodology, and study population of the r‑Kids study. BMC Pediatrics. 2023; 23:128. doi: 10.1186/s12887-023-03893-7.
• Bulkley JE, McMullen CK, Rawlings AM, Krouse RS, Francisco MC, Sterrett AT, Burnett-Hartman AN, Pawloski PA, Corley DA, Colwell JC, Feigelson HS. The association of bowel function, participation in life activities, and quality of life in rectal cancer survivors. Qual Life Res. 2022 Feb;31(2):487-495. doi: 10.1007/s11136-021-02930-1. Epub 2021 Jul 12. PMID: 34251589.
• Bulkley JE, O’Keeffe-Rosetti M, Wendel CS, Davis JV, Danforth KN, Harrison TN, Kwan ML, Munneke JR, Brooks N, Grant M, Leo MC, Banegas MP, Weinmann S, McMullen CK. The effect of multiple recruitment contacts on response rates and patterns of missing data in a survey of bladder cancer survivors six months after cystectomy.  Quality of Life Research 2020; 29(4):879–889. doi: 10.1007/s11136-019-02379-3.
• Vesco KK, Leo MC, Bulkley JE, Beadle KR, Stoneburner AB, Francisco M, Clark AL. Improving management of the genitourinary syndrome of menopause: evaluation of a health system-based, cluster-randomized intervention. Am J Obstet Gynecol. 2021 Jan;224(1):62.e1-62.e13. doi: 10.1016/j.ajog.2020.07.029. Epub 2020 Jul 18. Erratum in: Am J Obstet Gynecol. 2021 Sep;225(3):336. doi: 10.1016/j.ajog.2021.02.013. PMID: 32693097.