Washington University School of Medicine


The following list of articles were helpful in forming the surveys.

Genomic Information Needs (general)

Wilson TD. Human information behavior. Informing science. 2000;3(2):49–56.

Case DO, Andrews JE, Johnson JD, Allard SL. Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts. Journal of the Medical Library Association. 2005;93(3):353–362.

Johnson JD, Case DO, Andrews JE, Allard SL. Genomics—the perfect information–seeking research problem. Journal of Health Communication. 2005;10(4):323–329. doi:10.1080/10810730590950048.

Shipman JP, Kurtz-Rossi S, Funk CJ. The Health Information Literacy Research Project. Journal of the Medical Library Association. 2009;97(4):293–301.


Genomic Information Needs of Basic Science Researchers

Geer RC. Broad issues to consider for library involvement in bioinformatics. J Med Libr Assoc. 2006;94(3):286–E155.

Grefsheim SF, Rankin JA. Information needs and information seeking in a biomedical research setting: a study of scientists and science administrators. J Med Libr Assoc. 2007;95(4):426–434. doi:10.3163/1536-5050.95.4.426.

Haines LL, Light J, O’Malley D, Delwiche FA. Information-seeking behavior of basic science researchers: implications for library services. J Med Libr Assoc. 2010;98(1):73–81. doi:10.3163/1536-5050.98.1.019.

Hemminger BM, Lu D, Vaughan K t. l., Adams SJ. Information seeking behavior of academic scientists. Journal of the American Society for Information Science and Technology. 2007;58(14):2205–2225. doi:10.1002/asi.20686.

Korjonen-Close H. The information needs and behaviour of clinical researchers: a user-needs analysis. Health Information & Libraries Journal. 2005;22(2):96–106. doi:10.1111/j.1471-1842.2005.00562.x.

Niu X, Hemminger BM, Lown C, et al. National study of information seeking behavior of academic researchers in the United States. Journal of the American Society for Information Science and Technology. 2010;61(5):869–890. doi:10.1002/asi.21307.

Niu X, Hemminger BM. A study of factors that affect the information-seeking behavior of academic scientists. Journal of the American Society for Information Science and Technology. 2012;63(2):336–353. doi:10.1002/asi.21669.

Reich M, Shipman JP, Narus SP, et al. Assessing clinical researchers’ information needs to create responsive portals and tools: My Research Assistant (MyRA) at the University of Utah: a case study. J Med Libr Assoc. 2013;101(1):4–11. doi:10.3163/1536-5050.101.1.002.

Rein DC. Developing library bioinformatics services in context: the Purdue University Libraries bioinformationist program. J Med Libr Assoc. 2006;94(3):314–E197.


Genomic Information Needs of Clinical Research Professionals and Healthcare Professionals

Centers for Disease Control, Office of Public Health Genomics. ACCE Model Process for Evaluating Genetic Tests. Available at: http://www.cdc.gov/genomics/gtesting/ACCE/index.htm. Accessed February 10, 2014.

Detlefsen E. The information behaviors of life and health scientists and health care providers: characteristics of the research literature. Bulletin of the Medical Library Association. 1998;86(3):385–390.

Feero W, Green ED. Genomics education for health care professionals in the 21st century. JAMA. 2011;306(9):989–990. doi:10.1001/jama.2011.1245.

Friedman L, Plon S, Cooper H, Weinberg A. Cancer genetics -- survey of primary care physicians’ attitudes and practices. Journal of Cancer Education. 1997;12(4):199–203.

Guttmacher AE, Porteous ME, McInerney JD. Educating health-care professionals about genetics and genomics. Nat Rev Genet. 2007;8(2):151–157. doi:10.1038/nrg2007.

Houwink EJ, van Luijk SJ, Henneman L, van der Vleuten C, Jan Dinant G, Cornel MC. Genetic educational needs and the role of genetics in primary care: a focus group study with multiple perspectives. BMC Fam Pract. 2011;12:5. doi:10.1186/1471-2296-12-5.

Kaye C, Korf B. Genetic Literacy and Competency. PEDIATRICS. 2013;132(Supplement):S224–S230. doi:10.1542/peds.2013-1032G.

Kritz M, Gschwandtner M, Stefanov V, Hanbury A, Samwald M. Utilization and Perceived Problems of Online Medical Resources and Search Tools Among Different Groups of European Physicians. J Med Internet Res. 2013;15(6). doi:10.2196/jmir.2436.

Powell KP, Cogswell WA, Christianson CA, et al. Primary Care Physicians’ Awareness, Experience and Opinions of Direct-to-Consumer Genetic Testing. Journal of Genetic Counseling. 2011;21(1):113–126. doi:10.1007/s10897-011-9390-9.

Saul RA. Genetic and genomic literacy in pediatric primary care. Pediatrics. 2013;132(Suppl 3):S198–202. doi:10.1542/peds.2013-1032C.

Wessel CB, Tannery NH, Epstein BA. Information-seeking behavior and use of information resources by clinical research coordinators. J Med Libr Assoc. 2006;94(1):48–54.

Younger P. Internet-based information-seeking behaviour amongst doctors and nurses: a short review of the literature. Health Info Libr J. 2010;27(1):2–10. doi:10.1111/j.1471-1842.2010.00883.x.


Genomic Information Needs of Community Organizations and/or Community Members

Case DO, Johnson JD, Andrews JE, Allard SL, Kelly KM. From Two-Step Flow to the Internet: The Changing Array of Sources for Genetics Information Seeking. Journal of the American Society for Information Science & Technology. 2004;55(8):660–669. doi:10.1002/asi.20000.

Condit C. Public understandings of genetics and health. Clinical Genetics. 2010;77(1):1–9. doi:10.1111/j.1399-0004.2009.01316.x.

Dijkstra AM, Gutteling JM, Swart JAA, Wieringa NF, van Derwindt HJ, Seydel ER. Public participation in genomics research in the Netherlands: validating a measurement scale. Public Underst Sci. 2012;21(4):465–477.

Haga SB, Barry WT, Mills R, et al. Public Knowledge of and Attitudes Toward Genetics and Genetic Testing. Genetic Testing and Molecular Biomarkers. 2013;17(4):327–335. doi:10.1089/gtmb.2012.0350.

Hurle B, Citrin T, Jenkins JF, et al. What does it mean to be genomically literate?: National Human Genome Research Institute Meeting Report. Genet Med. 2013;15(8):658–663. doi:10.1038/gim.2013.14.

Lea DH, Kaphingst KA, Bowen D, Lipkus I, Hadley DW. Communicating Genetic and Genomic Information: Health Literacy and Numeracy Considerations. Public Health Genomics. 2011;14(4-5):279–289. doi:10.1159/000294191.

Sørensen K, Brand H. Health Literacy: The Essential Catalyst for the Responsible and Effective Translation of Genome-Based Information for the Benefit of Population Health. Public Health Genomics. 2011;14(4-5):195–200. doi:10.1159/000324241.

Tarver T. Genomics: A New Challenge in Consumer Health Information Literacy. Journal of Hospital Librarianship. 2010;10(1):23–32. doi:10.1080/15323260903470910.

US Department of Health and Human Services, Secretary’s Advisory Committee on Genetics, Health, and Society. Genetics Education and Training. February 2011. Available at: http://oba.od.nih.gov/oba/SACGHS/reports/SACGHS_education_report_2011.pdf. Accessed February 26, 2013