AAAS (American Association for the Advancement of Science). 1989. Science for all Americans. Washington, DC: American Association for the Advancement of Science.
Ancker, J. S., and D. Kaufman. 2007. Rethinking health numeracy: A multidisciplinary literature review. Journal of the American Medical Informatics Association 14(6):713–721.
Ancker, J. S., Y. Barron, M. L. Rockoff, D. Hauser, M. Pichardo, A. Szerencsy, and N. Calman. 2011. Use of an electronic patient portal among disadvantaged populations. Journal of General Internal Medicine 26(10):1117–1123.
Appelbaum, P. S., E. Parens, C. R. Waldman, R. Klitzman, A. Fyer, J. Martinez, W. N. Price, 2nd, and W. K. Chung. 2014. Models of consent to return of incidental findings in genomic research. Hastings Center Report 44(4):22–32.
Appelbaum, P. S., A. Fyer, R. L. Klitzman, J. Martinez, E. Parens, Y. Zhang, and W. K. Chung. 2015. Researchers’ views on informed consent for return of secondary results in genomic research. Genetics in Medicine 17(8):644–650.
Arcia, A., M. Velez, and S. Bakken. 2015. Style guide: An interdisciplinary communication tool to support the process of generating tailored infographics from electronic health data using EnTICE3. eGEMs 3(1):1120.
Arcia, A., N. Suero-Tejeda, M. E. Bales, J. A. Merrill, S. Yoon, J. Woollen, and S. Bakken. 2016. Sometimes more is more: Iterative participatory design of infographics for engagement of community members with varying levels of health literacy. Journal of the American Medical Informatics Association 23(1):174–183.
Bailey, S. C., R. O’Conor, E. A. Bojarski, R. Mullen, R. E. Patzer, D. Vicencio, K. L. Jacobson, R. M. Parker, and M. S. Wolf. 2015. Literacy disparities in patient access and health-related use of internet and mobile technologies. Health Expectations 18(6):3079–3087.
Baker, D. W., R. M. Parker, M. V. Williams, K. Pitkin, N. S. Parikh, W. Coates, and M. Imara. 1996. The health care experience of patients with low literacy. Archives of Family Medicine 5(6):329–334.
Bell, C. J., D. L. Dinwiddie, N. A. Miller, S. L. Hateley, E. E. Ganusova, J. Mudge, R. J. Langley, L. Zhang, C. C. Lee, F. D. Schilkey, V. Sheth, J. E. Woodward, H. E. Peckham, G. P. Schroth, R. W. Kim, and S. F. Kingsmore. 2011. Carrier testing for severe childhood recessive diseases by next-generation sequencing. Science Translational Medicine 3(65):1–14.
Bennett, I., J. Switzer, A. Aguirre, K. Evans, and F. Barg. 2006. “Breaking it down”: Patient–clinician communication and prenatal care among African American women of low and higher literacy. Annals of Family Medicine 4(4):334–340.
Berkman, N. D., T. C. Davis, and L. McCormack. 2010. Health literacy: What is it? Journal of Health Communication 15(Suppl 2):9–19.
Biological Sciences Curriculum Study and Social Science Education Consortium. 1992. Teaching about the history and nature of science and technology: A curriculum framework. Colorado Springs, CO: Biological Sciences Curriculum Study.
Chan, M. Y., S. Haber, L. M. Drew, and D. C. Park. 2014. Training older adults to use tablet computers: Does it enhance cognitive function? Gerontologist 56(3):475-484.
Collins, F. 2015. Q&A: Francis Collins on high hopes and a mad schedule for precision medicine. Politico, December 27. http://www.politico.com/story/2015/12/francis-collins-nih-health-precision-medicine-initiative-217150 (accessed April 24, 2016).
Cunningham, J., S. T. Miller, Y. Joosten, J. D. Elzey, T. Israel, C. King, P. Luther, Y. Vaughn, and C. H. Wilkins. 2015. Community-engaged strategies to promote relevance of research capacity-building efforts targeting community organizations. Clinical and Translational Science 8(5):513–517.
Doak, L. G., C. C. Doak, and C. D. Meade. 1996. Strategies to improve cancer education materials. Oncology Nursing Forum 23(8):1305–1312.
Dougherty, M. J. 2009. Closing the gap: Inverting the genetics curriculum to ensure an informed public. American Journal of Human Genetics 85(1):6–12.
Erby, L. H., D. Roter, S. Larson, and J. Cho. 2008. The rapid estimate of adult literacy in genetics (REAL-G): A means to assess literacy deficits in the context of genetics. American Journal of Medical Genetics, Part A 146A(2):174–181.
Feero, W. G. 2016. Establishing the clinical validity of arrhythmia-related genetic variations using the electronic medical record: A valid take on precision medicine? JAMA 315(1):33–35.
Finucane, M. L., P. Slovic, and C. K. Mertz. 2000. Public perception of the risk of blood transfusion. Transfusion 40(8):1017–1022.
Fischbach, R. L., M. J. Harris, M. S. Ballan, G. D. Fischbach, and B. G. Link. 2016. Is there concordance in attitudes and beliefs between parents and scientists about autism spectrum disorder? Autism 20(3):353–363.
Fung, A. W., L. C. Lam, and V. W. Lui. 2010. Could hypothetical scenarios enhance understanding on decision for life-sustaining treatment in non-demented Chinese older persons? Aging Ment Health 14(8):994–999.
Galesic, M., and R. Garcia-Retamero. 2011. Do low-numeracy people avoid shared decision making? Health Psychology 30(3):336–341.
Green, R. C., J. S. Berg, W. W. Grody, S. S. Kalia, B. R. Korf, C. L. Martin, A. McGuire, R. L. Nussbaum, J. M. O’Daniel, K. E. Ormond, H. L. Rehm, M. S. Watson, M. S. Williams, and L. G. Biesecker. 2013. ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genetics in Medicine 15(7):565–574.
Haelle, T., and E. Willingham. 2016. The informed parent: A science-based resource for your child’s first four years. New York: TarcherPerigee.
Harris, S. 2010. The moral landscape: How science can determine human values. New York: Free Press.
Heller, C., J. E. Balls-Berry, J. D. Nery, P. J. Erwin, D. Littleton, M. Kim, and W. P. Kuo. 2014. Strategies addressing barriers to clinical trial enrollment of underrepresented populations: A systematic review. Contemporary Clinical Trials 39(2):169–182.
Hickey, K. T., R. R. Sciacca, A. B. Biviano, W. Whang, J. M. Dizon, H. Garan, and W. K. Chung. 2014a. The effect of cardiac genetic testing on psychological well-being and illness perceptions. Heart and Lung 43(2):127–132.
Hickey, K. T., J. Y. Taylor, R. R. Sciacca, S. Aboelela, P. Gonzalez, C. Castillo, N. Hauser, and A. Frulla. 2014b. Cardiac genetic testing: A single-center pilot study of a Dominican population. Hispanic Health Care International 12(4):183–188.
Hott, A. M., C. A. Huether, J. D. McInerney, C. Christianson, R. Fowler, H. Bender, J. Jenkins, A. Wysocki, G. Markle, and R. Karp. 2002. Genetics content in introductory biology courses for non-science majors: Theory and practice. Bioscience 52(11):1024–1035.
Katz, E., and P. F. Lazarsfeld. 1955. Personal influence: The part played by people in the flow of mass communication. New York: Free Press.
Kenny, L., C. Hattersley, B. Molins, C. Buckley, C. Povey, and E. Pellicano. 2015. Which terms should be used to describe autism? Perspectives from the UK autism community. Autism 20(4):442–462.
Klitzman, R., P. S. Appelbaum, A. Fyer, J. Martinez, B. Buquez, J. Wynn, C. R. Waldman, J. Phelan, E. Parens, and W. K. Chung. 2013. Researchers’ views on return of incidental genomic research results: Qualitative and quantitative findings. Genetics in Medicine 15(11):888–895.
Koh, H. K., C. Brach, L. M. Harris, and M. L. Parchman. 2013. A proposed “health literate care model” would constitute a systems approach to improving patients’ engagement in care. Health Affairs 32(2):357–367.
Kressin, N. R., M. Meterko, and N. J. Wilson. 2000. Racial disparities in participation in biomedical research. Journal of the National Medical Association 92(2):62–69.
Kutner, M., E. Greenberg, Y. Jin, and C. Paulsen. 2006. The health literacy of America’s adults: Results from the 2003 National Assessment of Adult Literacy. Washington, DC: National Center for Educational Statistics.
MacArthur, D. G., T. A. Manolio, D. P. Dimmock, H. L. Rehm, J. Shendure, G. R. Abecasis, D. R. Adams, R. B. Altman, S. E. Antonarakis, E. A. Ashley, J. C. Barrett, L. G. Biesecker, D. F. Conrad, G. M. Cooper, N. J. Cox, M. J. Daly, M. B. Gerstein, D. B. Goldstein, J. N. Hirschhorn, S. M. Leal, L. A. Pennacchio, J. A. Stamatoyannopoulos, S. R. Sunyaev, D. Valle, B. F. Voight, W. Winckler, and C. Gunter. 2014. Guidelines for investigating causality of sequence variants in human disease. Nature 508(7497):469–476.
McCarthy, D. M., K. A. Leone, D. H. Salzman, J. A. Vozenilek, and K. A. Cameron. 2012. Language use in the informed consent discussion for emergency procedures. Teaching and Learning in Medicine 24(4):315–320.
McNeil, B. J., S. G. Pauker, H. C. Sox, Jr., and A. Tversky. 1982. On the elicitation of preferences for alternative therapies. New England Journal of Medicine 306(21):1259–1262.
Mega, J. L., S. L. Close, S. D. Wiviott, L. Shen, J. R. Walker, T. Simon, E. M. Antman, E. Braunwald, and M. S. Sabatine. 2010. Genetic variants in ABCB1 and CYP2C19 and cardiovascular outcomes after treatment with clopidogrel and prasugrel in the TRITONTIMI 38 trial: A pharmacogenetic analysis. Lancet 376(9749):1312–1319.
Musunuru, K., K. T. Hickey, S. M. Al-Khatib, C. Delles, M. Fornage, C. S. Fox, L. Frazier, B. D. Gelb, D. M. Herrington, D. E. Lanfear, and J. Rosand. 2015. Basic concepts and potential applications of genetics and genomics for cardiovascular and stroke clinicians: A scientific statement from the American Heart Association. Circulation: Cardiovascular Genetics 8(1):216–242.
Ownby, R. L., A. Acevedo, K. Goodman, J. Caballero, and D. Waldrop-Valverde. 2015. Health literacy predicts participant understanding of orally-presented informed consent information. Clinical Research Trials 1(1):15–19.
Paasche-Orlow, M. K., and M. S. Wolf. 2007. The causal pathways linking health literacy to health outcomes. American Journal of Health Behavior 31(Suppl 1):S19–S26.
Paasche-Orlow, M. K., H. A. Taylor, and F. L. Brancati. 2003. Readability standards for informed-consent forms as compared with actual readability. New England Journal of Medicine 348(8):721–726.
Parker, R. M., S. Bakken, and M. S. Wolf. 2016. Getting it right with the precision medicine initiative: The role of health literacy. National Academy of Medicine Perspectives, February 2. https://nam.edu/getting-it-right-with-the-precision-medicine-initiative-the-role-of-health-literacy (accessed October 26, 2016).
Parrott, R. L., K. J. Silk, M. R. Dillow, J. L. Krieger, T. M. Harris, and C. M. Condit. 2005. Development and validation of tools to assess genetic discrimination and genetically based racism. Journal of the National Medical Association 97(7):980–990.
Paskett, E. D., K. W. Reeves, J. M. McLaughlin, M. L. Katz, A. S. McAlearney, M. T. Ruffin, C. H. Halbert, C. Merete, F. Davis, and S. Gehlert. 2008. Recruitment of minority and underserved populations in the United States: The centers for population health and health disparities experience. Contemporary Clinical Trials 29(6):847–861.
Peters, E., P. S. Hart, and L. Fraenkel. 2011. Informing patients: The influence of numeracy, framing, and format of side effect information on risk perceptions. Medical Decision Making 31(3):432–436.
Peters, E., H. Kunreuther, N. Sagara, P. Slovic, and D. R. Schley. 2012. Protective measures, personal experience, and the affective psychology of time. Risk Analysis 32(12):2084–2097.
Peterson, J. F., J. R. Field, K. Unertl, J. S. Schildcrout, D. C. Johnson, Y. Shi, I. Danciu, J. H. Cleator, J. M. Pulley, J. A. McPherson, J. C. Denny, M. Laposata, D. M. Roden, and K. B. Johnson. 2015. Physician response to implementation of genotype-tailored antiplatelet therapy. Clinical Pharmacology and Therapeutics 100(1):67–74.
Rabbitt, P., P. Diggle, F. Holland, and L. McInnes. 2004. Practice and drop-out effects during a 17-year longitudinal study of cognitive aging. Journals of Gerontology. Series B: Psychological Sciences and Social Sciences 59(2):P84–P97.
Ratzan, S. C., and R. M. Parker. 2000. Introduction. In National Library of Medicine current bibliographies in medicine: Health literacy. NLM publication # CBM 2001, edited by C. R. Selden, M. Zorn, S. C. Ratzan and D. C. Park. Bethesda, MD: National Library of Medicine.
Resta, R., B. B. Biesecker, R. L. Bennett, S. Blum, S. E. Hahn, M. N. Strecker, and J. L. Williams. 2006. A new definition of genetic counseling: National Society of Genetic Counselors’ task force report. Journal of Genetic Counseling 15(2):77–83.
Reyna, V. F., W. L. Nelson, P. K. Han, and N. F. Dieckmann. 2009. How numeracy influences risk comprehension and medical decision making. Psychological Bulletin 135(6):943–973.
Roter, D. L., L. H. Erby, S. Larson, and L. Ellington. 2007. Assessing oral literacy demand in genetic counseling dialogue: Preliminary test of a conceptual framework. Social Science and Medicine 65(7):1442–1457.
Roter, D. L., L. Erby, S. Larson, and L. Ellington. 2009. Oral literacy demand of prenatal genetic counseling dialogue: Predictors of learning. Patient Education and Counseling 75(3):392–397.
Rudd, R. E. 2010. Improving Americans’ health literacy. New England Journal of Medicine 363(24):2283–2285.
Sabatine, M. S., C. P. Cannon, C. M. Gibson, J. L. López-Sendón, G. Montalescot, P. Theroux, M. J. Claeys, F. Cools, K. A. Hill, A. M. Sken, C. H. McCabe, and E. Braunwald. 2005. Addition of clopidogrel to aspirin and fibrinolytic therapy for myocardial infarction with ST-segment elevation. New England Journal of Medicine 352(12):1179–1189.
Schillinger, D., A. Bindman, F. Wang, A. Stewart, and J. Piette. 2004. Functional health literacy and the quality of physician–patient communication among diabetes patients. Patient Education and Counseling 52(3):315–323.
Smith, S. G., R. O’Conor, W. Aitken, L. M. Curtis, M. S. Wolf, and M. S. Goel. 2015. Disparities in registration and use of an online patient portal among older adults: Findings from the LITCOG cohort. Journal of the American Medical Informatics Association 22(4):888–895.
Sugarman, J., and M. Paasche-Orlow. 2006. Confirming comprehension of informed consent as a protection of human subjects. Journal of General Internal Medicine 21(8):898–899.
Van Driest, S. L., Q. S. Wells, S. Stallings, W. S. Bush, A. Gordon, D. A. Nickerson, J. H. Kim, D. R. Crosslin, G. P. Jarvik, D. S. Carrell, J. D. Ralston, E. B. Larson, S. J. Bielinski, J. E. Olson, Z. Ye, I. J. Kullo, N. S. Abul-Husn, S. A. Scott, E. Bottinger, B. Almoguera, J. Connolly, R. Chiavacci, H. Hakonarson, L. J. Rasmussen-Torvik, V. Pan, S. D. Persell, M. Smith, R. L. Chisholm, T. E. Kitchner, M. M. He, M. H. Brilliant, J. R. Wallace, K. F. Doheny, M. B. Shoemaker, R. Li, T. A. Manolio, T. E. Callis, D. Macaya, M. S. Williams, D. Carey, J. D. Kapplinger, M. J. Ackerman, M. D. Ritchie, J. C. Denny, and D. M. Roden. 2016. Association of arrhythmia-related genetic variants with phenotypes documented in electronic medical records. JAMA 315(1):47–57.
Wagle, N., C. Emery, M. F. Berger, M. J. Davis, A. Sawyer, P. Pochanard, S. M. Kehoe, C. M. Johannessen, L. E. Macconaill, W. C. Hahn, M. Meyerson, and L. A. Garraway. 2011. Dissecting therapeutic resistance to RAF inhibition in melanoma by tumor genomic profiling. Journal of Clinical Oncology 29(22):3085–3096.
Wallentin, L., S. James, R. F. Storey, M. Armstrong, B. J. Barratt, J. Horrow, S. Husted, H. Katus, P. G. Steg, S. H. Shah, and R. C. Becker. 2010. Effect of CYP2C19 and ABCB1 single nucleotide polymorphisms on outcomes of treatment with ticagrelor versus clopidogrel for acute coronary syndromes: A genetic substudy of the PLATO trial. Lancet 376(9749):1320–1328.
Wilkins, C. H., M. Spofford, N. Williams, C. McKeever, S. Allen, J. Brown, J. Opp, A. Richmond, and A. H. Strelnick. 2013. Community representatives’ involvement in clinical and translational science awardee activities. Clinical and Translational Science 6(4):292–296.
Williams, J. K., M. C. Katapodi, A. Starkweather, L. Badzek, A. K. Cashion, B. Coleman, M. R. Fu, D. Lyon, M. T. Weaver, and K. T. Hickey. 2016. Advanced nursing practice and research contributions to precision medicine. Nursing Outlook 64(2):117–123.
Williams, M. V., D. W. Baker, R. M. Parker, and J. R. Nurss. 1998. Relationship of functional health literacy to patients’ knowledge of their chronic disease: A study of patients with hypertension and diabetes. Archives of Internal Medicine 158(2):166–172.
Wolf, M. S., C. H. Chang, T. Davis, and G. Makoul. 2005. Development and validation of the communication and attitudinal self-efficacy scale for cancer (CASE-cancer). Patient Education and Counseling 57(3):333–341.
Wu, S., J. M. Hofman, W. A. Mason, and D. J. Watts. 2011. Who says what to whom on Twitter. WWW 2011, March 28–April 1, 2011, Hyderabad, India.
Yancey, A. K., A. N. Ortega, and S. K. Kumanyika. 2006. Effective recruitment and retention of minority research participants. Annual Review of Public Health 27:1–28.
Zikmund-Fisher, B. J., A. Fagerlin, and P. A. Ubel. 2010. A demonstration of “‘less can be more’” in risk graphics. Medical Decision Making 30(6):661–671.
Zikmund-Fisher, B. J., M. Dickson, and H. O. Witteman. 2011. Cool but counterproductive: Interactive, Web-based risk communications can backfire. Journal of Medical Internet Research 13(3):e60.
This page intentionally left blank.