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Suggested Citation:"References." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
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References

Advisory Committee on Health Research. 2002. Genomics and world health. Geneva, Switzerland: World Health Organization.

American Cancer Society. 2017. Breast Cancer Facts & Figures 2017–2018. Atlanta, GA: American Cancer Society. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/breast-cancer-facts-and-figures/breast-cancer-facts-and-figures-2017-2018.pdf (accessed September 28, 2018).

Butrick, M., S. Kelly, B. N. Peshkin, G. Luta, R. Nusbaum, G. W. Hooker, K. Graves, L. Feeley, C. Isaacs, H. B. Valdimarsdottir, L. Jandorf, T. DeMarco, M. Wood, W. McKinnon, J. Garber, S. R. McCormick, and M. D. Schwartz. 2015. Disparities in uptake of BRCA1/2 genetic testing in a randomized trial of telephone counseling. Genetic Medicine 17(6):467–475.

Carethers, J. M., and E. M. Stoffel. 2015. Lynch syndrome and Lynch syndrome mimics: The growing complex landscape of hereditary colon cancer. World Journal of Gastroenterology 21(31):9253–9261.

CDC (Centers for Disease Control and Prevention). 2016. Preventive services covered without cost sharing. https://www.cdc.gov/nchhstp/preventionthroughhealthcare/healthdepartments/services.htm (accessed August 29, 2018).

Cheng, J. K. Y., C. Guerra, R. J. Pasick, D. Schillinger, J. Luce, and G. Joseph. 2018. Cancer genetic counseling communication with low-income Chinese immigrants. Journal of Community Genetics 9(3):263–276.

Childers, K. K., M. Maggard-Gibbons, J. Macinko, and C. P. Childers. 2018. National distribution of cancer genetic testing in the United States: Evidence for a gender disparity in hereditary breast and ovarian cancer. JAMA Oncology 4(6):876–879.

Chun, D. S., B. Berse, V. L. Venne, S. L. DuVall, K. K. Filipski, M. J. Kelley, L. J. Meyer, M. S. Icardi, and J. A. Lynch. 2017. BRCA testing within the Department of Veterans Affairs: Concordance with clinical practice guidelines. Familial Cancer 16(1):41–49.

Suggested Citation:"References." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
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Deverka, P., D. A. Messner, R. McCormack, G. H. Lyman, M. Piper, L. Bradley, D. Parkinson, D. Nelson, H. L. McLeod, M. L. Smith, L. Jacques, T. Dutta, and S. R. Tunis. 2016. Generating and evaluating evidence of the clinical utility of molecular diagnostic tests in oncology. Genetic Medicine 18(8):780–787.

Dougherty, M. J., C. Pleasants, L. Solow, A. Wong, H. Zhang, and E. Stone. 2011. A comprehensive analysis of high school genetics standards: Are states keeping pace with modern genetics? CBE—Life Sciences Education 10(3):318–327.

FDA (U.S. Food and Drug Administration). 2018. FDA authorizes, with special controls, direct-to-consumer test that reports three mutations in the BRCA breast cancer genes. March 6. www.fda.gov/newsevents/newsroom/pressannouncements/ucm599560.htm (accessed August 20, 2018).

Fontaine, S. A., U. K. Henschke, L. D. Leffall, Jr., C. H. Mason, A. W. Reinhold, R. Schneider, and J. E. White. 1972. Comparison of the cancer deaths in the black and white U.S.A. population from 1949 to 1967. Medical Annals of the District of Columbia 41(5):293–298.

Francke, U., C. Dijamco, A. K. Kiefer, N. Eriksson, B. Moiseff, J. Y. Tung, and J. L. Mountain. 2013. Dealing with the unexpected: Consumer responses to direct-access BRCA mutation testing. PeerJ 1:e8.

Friedman, S. 2018. Solving for y: Reaching men about genetic testing for hereditary breast, ovarian, pancreatic, prostate and related cancers (HBOC). FORCE Blog, June 17. http://www.facingourrisk.org/get-involved/HBOC-community/BRCA-HBOC-blogs/FORCE/uncategorized/solving-for-y-genetic-testing-in-men (accessed September 16, 2018).

Funk, C., and S. K. Goo. 2015. A look at what the public knows and does not know about science. Washington, DC: Pew Research Center.

Green, R. C., K. A. B. Goddard, G. P. Jarvik, L. M. Amendola, P. S. Appelbaum, J. S. Berg, B. A. Bernhardt, L. G. Biesecker, S. Biswas, C. L. Blout, K. M. Bowling, K. B. Brothers, W. Burke, C. F. Caga-Anan, A. M. Chinnaiyan, W. K. Chung, E. W. Clayton, G. M. Cooper, K. East, J. P. Evans, S. M. Fullerton, L. A. Garraway, J. R. Garrett, S. W. Gray, G. E. Henderson, L. A. Hindorff, I. A. Holm, M. H. Lewis, C. M. Hutter, P. A. Janne, S. Joffe, D. Kaufman, B. M. Knoppers, B. A. Koenig, I. D. Krantz, T. A. Manolio, L. McCullough, J. McEwen, A. McGuire, D. Muzny, R. M. Myers, D. A. Nickerson, J. Ou, D. W. Parsons, G. M. Petersen, S. E. Plon, H. L. Rehm, J. S. Roberts, D. Robinson, J. S. Salama, S. Scollon, R. R. Sharp, B. Shirts, N. B. Spinner, H. K. Tabor, P. Tarczy-Hornoch, D. L. Veenstra, N. Wagle, K. Weck, B. S. Wilfond, K. Wilhelmsen, S. M. Wolf, J. Wynn, and J. H. Yu. 2016. Clinical sequencing exploratory research consortium: Accelerating evidence-based practice of genomic medicine. American Journal of Human Genetics 98(6):1051–1066.

Hauser, D., A. O. Obeng, K. Fei, M. A. Ramos, and C. R. Horowitz. 2018. Views of primary care providers on testing patients for genetic risks for common chronic diseases. Health Affairs (Millwood) 37(5):793–800.

Howard, J., B. F. Hankey, R. S. Greenberg, D. F. Austin, P. Correa, V. W. Chen, and S. Durako. 1992. A collaborative study of differences in the survival rates of black patients and white patients with cancer. Cancer 69(9):2349–2360.

IOM (Institute of Medicine). 2002. Unequal treatment: Confronting racial and ethnic disparities in health care. Washington, DC: The National Academies Press.

IOM. 2015. Improving genetics education in graduate and continuing health professional education: Workshop summary. Washington, DC: The National Academies Press.

Jacobs, A. S., M. D. Schwartz, H. Valdimarsdottir, R. H. Nusbaum, G. W. Hooker, T. A. DeMarco, J. E. Heinzmann, W. McKinnon, S. R. McCormick, C. Davis, A. D. Forman, A. P. Lebensohn, E. Dalton, D. M. Tully, K. D. Graves, M. Similuk, S. Kelly, and B. N. Peshkin. 2016. Patient and genetic counselor perceptions of in-person versus telephone genetic counseling for hereditary breast/ovarian cancer. Familial Cancer 15(4):529–539.

Suggested Citation:"References." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×

Joseph, G., C. Kaplan, J. Luce, R. Lee, S. Stewart, C. Guerra, and R. Pasick. 2012. Efficient identification and referral of low-income women at high risk for hereditary breast cancer: A practice-based approach. Public Health Genomics 15(3–4):172–180.

Joseph, G., R. J. Pasick, D. Schillinger, J. Luce, C. Guerra, and J. K. Y. Cheng. 2017a. Erratum to: Information mismatch: Cancer risk counseling with diverse underserved patients. Journal of Genetic Counseling 26(5):1105.

Joseph, G., R. J. Pasick, D. Schillinger, J. Luce, C. Guerra, and J. K. Y. Cheng. 2017b. Information mismatch: Cancer risk counseling with diverse underserved patients. Journal of Genetic Counseling 26(5):1090–1104.

Kamara, D., J. Weil, J. Youngblom, C. Guerra, and G. Joseph. 2018. Cancer counseling of low-income limited english proficient latina women using medical interpreters: Implications for shared decision-making. Journal of Genetic Counseling 27(1):155–168.

Lennerz, J. K., H. M. McLaughlin, J. M. Baron, D. Rasmussen, M. Sumbada Shin, N. Berners-Lee, J. Miller Batten, K. J. Swoboda, M. K. Gala, H. S. Winter, J. D. Schmahmann, D. A. Sweetser, M. Boswell, M. Pacula, A. Stenzinger, L. P. Le, W. Hynes, H. L. Rehm, A. Klibanski, S. W. Black-Schaffer, J. A. Golden, D. N. Louis, S. T. Weiss, and A. J. Iafrate. 2016. Health care infrastructure for financially sustainable clinical genomics. Journal of Molecular Diagnostics 18(5):697–706.

Luizon, M. R., W. L. Eckalbar, Y. Wang, S. L. Jones, R. P. Smith, M. Laurance, L. Lin, P. J. Gallins, A. S. Etheridge, F. Wright, Y. Zhou, C. Molony, F. Innocenti, S. W. Yee, K. M. Giacomini, and N. Ahituv. 2016. Genomic characterization of metformin hepatic response. PLOS Genetics 12(11):e1006449.

Lynch, H. T., C. L. Snyder, T. G. Shaw, C. D. Heinen, and M. P. Hitchins. 2015. Milestones of Lynch syndrome: 1895–2015. Nature Reviews Cancer 15(3):181–194.

McCarthy, A. M., M. Bristol, S. M. Domchek, P. W. Groeneveld, Y. Kim, U. N. Motanya, J. A. Shea, and K. Armstrong. 2016. Health care segregation, physician recommendation, and racial disparities in BRCA1/2 testing among women with breast cancer. Journal of Clinical Oncology 34(22):2610–2618.

McGrath, R. J., D. J. Laflamme, A. P. Schwartz, M. Stransky, and J. B. Moeschler. 2009. Access to genetic counseling for children with autism, Down syndrome, and intellectual disabilities. Pediatrics 124(Suppl 4):S443–S449.

Mikat-Stevens, N. A., I. A. Larson, and B. A. Tarini. 2015. Primary-care providers’ perceived barriers to integration of genetics services: A systematic review of the literature. Genetic Medicine 17(3):169–176.

NASEM (National Academies of Sciences, Engineering, and Medicine). 2018. Making medicines affordable: A national imperative. Washington, DC: The National Academies Press.

NCCN (National Comprehensive Cancer Network). 2018. Genetic/familial high-risk assessment: Breast and ovarian (Version 2.2018). www.nccn.org/professionals/physician_gls/pdf/bone.pdf (accessed August 20, 2018).

NHGRI (National Human Genome Research Institute). 2018. What is genomic medicine?https://www.genome.gov/27552451/what-is-genomic-medicine/#al-1 (accessed August 16, 2018).

Pasick, R. J., G. Joseph, S. Stewart, C. Kaplan, R. Lee, J. Luce, S. Davis, T. Marquez, T. Nguyen, and C. Guerra. 2016. Effective referral of low-income women at risk for hereditary breast and ovarian cancer to genetic counseling: A randomized delayed intervention control trial. American Journal of Public Health 106(10):1842–1848.

Peshkin, B. N., S. Kelly, R. H. Nusbaum, M. Similuk, T. A. DeMarco, G. W. Hooker, H. B. Valdimarsdottir, A. D. Forman, J. R. Joines, C. Davis, S. R. McCormick, W. McKinnon, K. D. Graves, C. Isaacs, J. Garber, M. Wood, L. Jandorf, and M. D. Schwartz. 2016. Patient perceptions of telephone vs. in-person BRCA1/BRCA2 genetic counseling. Journal of Genetic Counseling 25(3):472–482.

Suggested Citation:"References." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×

Rahimzadeh, V., and G. Bartlett. 2014. Genetics and primary care: Where are we headed? Journal of Translational Medicine 12:238.

Rahman, A., R. Chow, P. Davis, R. Depew, C. Esiobu, P. Hong, A. Ifeadike, B. Lim, C. Marts, R. Rastogi, J. M. Singh, M. Xie, and C. Zhong. 2013. Preparing for personalized medicine in Massachusetts: Enhancing genetics education for patients and health professionals. Harvard University Institute of Politics. http://www.iop.harvard.edu/sites/default/files_new/research-policy-papers/Preparing_for_Personalized_Medicine_Massachusetts.pdf (accessed November 2, 2018).

Ram, N., C. J. Guerrini, and A. L. McGuire. 2018. Genealogy databases and the future of criminal investigation. Science 360(6393):1078–1079.

Reynolds, T. 1997. Panel grapples with the legacy of “race medicine” in research. Journal of the National Cancer Institute 89(11):758–761.

Rezende, L. 2016. How patients decide to participate in clinical trials: Results of the Project IMPACT survey.http://www.facingourrisk.org/research-clinical-trials/research-findings/clinical-trial-participation.php (accessed July 23, 2018).

Schwartz, M. D., H. B. Valdimarsdottir, B. N. Peshkin, J. Mandelblatt, R. Nusbaum, A. T. Huang, Y. Chang, K. Graves, C. Isaacs, M. Wood, W. McKinnon, J. Garber, S. McCormick, A. Y. Kinney, G. Luta, S. Kelleher, K. G. Leventhal, P. Vegella, A. Tong, and L. King. 2014. Randomized noninferiority trial of telephone versus in-person genetic counseling for hereditary breast and ovarian cancer. Journal of Clinical Oncology 32(7):618–626.

Schwartz, M. D., B. N. Peshkin, C. Isaacs, S. Willey, H. B. Valdimarsdottir, R. Nusbaum, G. Hooker, S. O’Neill, L. Jandorf, S. P. Kelly, J. Heinzmann, A. Zidell, and K. Khoury. 2018. Randomized trial of proactive rapid genetic counseling versus usual care for newly diagnosed breast cancer patients. Breast Cancer Research and Treatment 170(3):517–524.

Sherman, B. W., T. B. Gibson, W. D. Lynch, and C. Addy. 2017. Health care use and spending patterns vary by wage level in employer-sponsored plans. Health Affairs (Millwood) 36(2):250–257.

Shipman, S. A., J. Lan, C. H. Chang, and D. C. Goodman. 2011. Geographic maldistribution of primary care for children. Pediatrics 127(1):19–27.

Singh, G. K., and A. Jemal. 2017. Socioeconomic and racial/ethnic disparities in cancer mortality, incidence, and survival in the United States, 1950–2014: Over six decades of changing patterns and widening inequalities. Journal of Environmental and Public Health 2017:2819372.

Sparano, J. A., R. J. Gray, D. F. Makower, K. I. Pritchard, K. S. Albain, D. F. Hayes, C. E. Geyer, Jr., E. C. Dees, M. P. Goetz, J. A. Olson, Jr., T. Lively, S. S. Badve, T. J. Saphner, L. I. Wagner, T. J. Whelan, M. J. Ellis, S. Paik, W. C. Wood, P. M. Ravdin, M. M. Keane, H. L. Gomez Moreno, P. S. Reddy, T. F. Goggins, I. A. Mayer, A. M. Brufsky, D. L. Toppmeyer, V. G. Kaklamani, J. L. Berenberg, J. Abrams, and G. W. Sledge Jr. 2018. Adjuvant chemotherapy guided by a 21-gene expression assay in breast cancer. New England Journal of Medicine 379(2):111–121.

Spellberg, B., J. G. Bartlett, and D. N. Gilbert. 2016. How to pitch an antibiotic stewardship program to the hospital C-suite. Open Forum Infectious Diseases 3(4):ofw210.

Stewart, S. L., C. P. Kaplan, R. Lee, G. Joseph, L. Karliner, J. Livaudais-Toman, and R. J. Pasick. 2016. Validation of an efficient screening tool to identify low-income women at high risk for hereditary breast cancer. Public Health Genomics 19(6):342–351.

Taylor, J. Y. 2009a. Risks for hypertension among undiagnosed African American mothers and daughters. Journal of Pediatric Health Care 23(6):378–387.

Taylor, J. Y. 2009b. Recruitment of three generations of African American women into genetics research. Journal of Transcultural Nursing 20(2):219–226.

Taylor, J. Y., D. Sampson, A. D. Taylor, D. Caldwell, and Y. V. Sun. 2013. Genetic and BMI risks for predicting blood pressure in three generations of West African Dogon women. Biological Research for Nursing 15(1):105–111.

Suggested Citation:"References." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 71
Suggested Citation:"References." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 72
Suggested Citation:"References." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 73
Suggested Citation:"References." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 74
Next: Appendix A: Summary of the Pre-Workshop Twitter Chat »
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Genomic medicine is defined as the routine use of genomic information about an individual as part of his or her clinical care as well as the health outcomes and policy implications of that clinical use. It is one approach that has the potential to improve the quality of health care by allowing practitioners to tailor prevention, diagnostic, and treatment strategies to individual patients. In recent years, research breakthroughs, technological advances, and the decreasing cost of DNA sequencing have led to the wider adoption of genomic medicine. However, as with the introduction of new technologies into health care, there are concerns that genetic and genomic testing and services will not reach all segments of the population both now and in the near future, and there remains a gap in knowledge regarding potential health care disparities in genomic medicine and precision health approaches.

On June 27, 2018, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop to examine the gaps in knowledge related to access to genomic medicine and to discuss health care disparities and possible approaches to overcoming the disparate use of genomic medicine among populations. Workshop participants discussed research on access to genetics and genomics services in medically underserved areas, model programs of care for diverse patient populations, and current challenges and possible best practices for alleviating health care disparities as they relate to genomics-based approaches. This publication summarizes the presentations and discussions from the workshop.

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