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Published in: Journal of Genetic Counseling 2/2012

01-04-2012 | Original Research

Family Physicians’ Awareness and Knowledge of the Genetic Information Non-Discrimination Act (GINA)

Authors: Amanda L. Laedtke, Suzanne M. O’Neill, Wendy S. Rubinstein, Kristen J. Vogel

Published in: Journal of Genetic Counseling | Issue 2/2012

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Abstract

Historically, physicians have expressed concern about their patients’ risk of genetic discrimination, which has acted as a barrier to uptake of genetic services. The Genetic Information Nondiscrimination Act of 2008 (GINA) is intended to protect patients against employer and health insurance discrimination. Physicians’ awareness and knowledge of GINA has yet to be evaluated. In 2009, we mailed surveys to 1500 randomly selected members of the American Academy of Family Physicians. Questions measured physicians’ current knowledge of GINA and their level of concern for genetic discrimination. In total, 401 physicians completed the survey (response rate 26.9%). Approximately half (54.5%) of physicians had no awareness of GINA. Of physicians who reported basic knowledge of GINA, the majority were aware of the protections offered for group health insurance (92.7%), private health insurance (82.9%), and employment (70.7%). Fewer physicians were aware of GINA’s limitations regarding life insurance (53.7%) and long-term care insurance (58.8%). Physicians demonstrated highest levels of concern for health insurance, life insurance, and long-term care insurance discrimination, with less concern for employer and family/social discrimination. Level of concern for the risk of genetic discrimination did not correlate significantly with awareness of GINA. Approximately 17 months after GINA was signed into federal law, physicians’ knowledge remained limited regarding the existence of this legislation and relevant details. Physicians who are aware of GINA continue to have significant concerns regarding the risk of genetic discrimination. This study reveals the need to further educate physicians about the existence of GINA and the protections offered.
Literature
go back to reference Aalfs, C. M., Smets, E. M., de Haes, H. C., & Leschot, N. J. (2003). Referral for genetic counselling during pregnancy: limited alertness and awareness about genetic risk factors among GPs. Family Practice, 20(2), 135–141.CrossRef Aalfs, C. M., Smets, E. M., de Haes, H. C., & Leschot, N. J. (2003). Referral for genetic counselling during pregnancy: limited alertness and awareness about genetic risk factors among GPs. Family Practice, 20(2), 135–141.CrossRef
go back to reference Baars, M. J., Henneman, L., & Ten Kate, L. P. (2005). Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: a global problem. Genetics in Medicine, 7(9), 605–610.CrossRef Baars, M. J., Henneman, L., & Ten Kate, L. P. (2005). Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: a global problem. Genetics in Medicine, 7(9), 605–610.CrossRef
go back to reference Baruch, S., & Hudson, K. (2008). Civilian and Military genetics: nondiscrimination policy in a post-GINA world. American Journal of Human Genetics, 83(4), 435–444.CrossRef Baruch, S., & Hudson, K. (2008). Civilian and Military genetics: nondiscrimination policy in a post-GINA world. American Journal of Human Genetics, 83(4), 435–444.CrossRef
go back to reference Billings, P. R., Kohn, M. A., de Cuevas, M., Beckwith, J., Alper, J. S., & Natowicz, M. R. (1992). Discrimination as a consequence of genetic testing. American Journal of Human Genetics, 50(3), 476–482.PubMedPubMedCentral Billings, P. R., Kohn, M. A., de Cuevas, M., Beckwith, J., Alper, J. S., & Natowicz, M. R. (1992). Discrimination as a consequence of genetic testing. American Journal of Human Genetics, 50(3), 476–482.PubMedPubMedCentral
go back to reference Durbin, R. M., Abecasis, G. R., Altshuler, D. L., Auton, A., Brooks, L. D., Gibbs, R. A., et al. (2010). A map of human genome variation from population-scale sequencing. Nature, 467(7319), 1061–1073.CrossRef Durbin, R. M., Abecasis, G. R., Altshuler, D. L., Auton, A., Brooks, L. D., Gibbs, R. A., et al. (2010). A map of human genome variation from population-scale sequencing. Nature, 467(7319), 1061–1073.CrossRef
go back to reference Erwin, C. (2009). Behind of Genetic Information Nondiscrimination Act of 2008. American Journal of Nursing, 109(12). Erwin, C. (2009). Behind of Genetic Information Nondiscrimination Act of 2008. American Journal of Nursing, 109(12).
go back to reference Farndon, P. A. (2006). Recording, using and sharing genetic information and test results: consent is the key in all medical specialties. Clinical Medicine, 6(3), 236–238.CrossRef Farndon, P. A. (2006). Recording, using and sharing genetic information and test results: consent is the key in all medical specialties. Clinical Medicine, 6(3), 236–238.CrossRef
go back to reference Hall, M. A., & Rich, S. S. (2000). Patients’ fear of genetic discrimination by health insurers: the impact of legal protections. Genetics in Medicine, 2(4), 214–221.CrossRef Hall, M. A., & Rich, S. S. (2000). Patients’ fear of genetic discrimination by health insurers: the impact of legal protections. Genetics in Medicine, 2(4), 214–221.CrossRef
go back to reference Hall, M. A., McEwen, J. E., Barton, J. C., Walker, A. P., Howe, E. G., Reiss, J. A., et al. (2005). Concerns in a primary care population about genetic discrimination by insurers. Genetics in Medicine, 7(5), 311–316.CrossRef Hall, M. A., McEwen, J. E., Barton, J. C., Walker, A. P., Howe, E. G., Reiss, J. A., et al. (2005). Concerns in a primary care population about genetic discrimination by insurers. Genetics in Medicine, 7(5), 311–316.CrossRef
go back to reference Hayflick, S. J., Eiff, M. P., Carpenter, L., & Steinberger, J. (1998). Primary care physicians’ utilization and perceptions of genetics services. Genetics in Medicine, 1(1), 13–21.CrossRef Hayflick, S. J., Eiff, M. P., Carpenter, L., & Steinberger, J. (1998). Primary care physicians’ utilization and perceptions of genetics services. Genetics in Medicine, 1(1), 13–21.CrossRef
go back to reference Health law - genetics - Congress restricts use of genetic information by insurers and employers. - Genetic Information Nondiscrimination Act of 2008, Harvard Law Review, 122(3), 1038–1045. Health law - genetics - Congress restricts use of genetic information by insurers and employers. - Genetic Information Nondiscrimination Act of 2008, Harvard Law Review, 122(3), 1038–1045.
go back to reference Hudson, K. L., Holohan, M. K., & Collins, F. S. (2008). Keeping pace with the times–the Genetic Information Nondiscrimination Act of 2008. The New England Journal of Medicine, 358(25), 2661–2663.CrossRef Hudson, K. L., Holohan, M. K., & Collins, F. S. (2008). Keeping pace with the times–the Genetic Information Nondiscrimination Act of 2008. The New England Journal of Medicine, 358(25), 2661–2663.CrossRef
go back to reference Huizenga, C. R., Lowstuter, K., Banks, K. C., Lagos, V. I., Vandergon, V. O., & Weitzel, J. N. (2009). Evolving perspectives on genetic discrimination in health insurance among health care providers. Familial Cancer. Huizenga, C. R., Lowstuter, K., Banks, K. C., Lagos, V. I., Vandergon, V. O., & Weitzel, J. N. (2009). Evolving perspectives on genetic discrimination in health insurance among health care providers. Familial Cancer.
go back to reference Kaphingst, K. A., McBride, C. M., Wade, C., Alford, S. H., Brody, L. C., & Baxevanis, A. D. (2010). Consumers’ use of web-based information and their decisions about multiplex genetic susceptibility testing. Journal of Medical Internet Research, 12(3), e41.CrossRef Kaphingst, K. A., McBride, C. M., Wade, C., Alford, S. H., Brody, L. C., & Baxevanis, A. D. (2010). Consumers’ use of web-based information and their decisions about multiplex genetic susceptibility testing. Journal of Medical Internet Research, 12(3), e41.CrossRef
go back to reference Lapham, E. V., Kozma, C., & Weiss, J. O. (1996). Genetic discrimination: perspectives of consumers. Science, 274(5287), 621–624.CrossRef Lapham, E. V., Kozma, C., & Weiss, J. O. (1996). Genetic discrimination: perspectives of consumers. Science, 274(5287), 621–624.CrossRef
go back to reference Leib, J. R., Hoodfar, E., Haidle, J. L., & Nagy, R. (2008). The new genetic privacy law: How GINA will affect patients seeking counseling and testing for inherited cancer risk. Community Oncology, 5, 351–354.CrossRef Leib, J. R., Hoodfar, E., Haidle, J. L., & Nagy, R. (2008). The new genetic privacy law: How GINA will affect patients seeking counseling and testing for inherited cancer risk. Community Oncology, 5, 351–354.CrossRef
go back to reference Lowstuter, K. J., Sand, S., Blazer, K. R., MacDonald, D. J., Banks, K. C., Lee, C. A., et al. (2008). Influence of genetic discrimination perceptions and knowledge on cancer genetics referral practice among clinicians. Genetics in Medicine, 10(9), 691–698.CrossRef Lowstuter, K. J., Sand, S., Blazer, K. R., MacDonald, D. J., Banks, K. C., Lee, C. A., et al. (2008). Influence of genetic discrimination perceptions and knowledge on cancer genetics referral practice among clinicians. Genetics in Medicine, 10(9), 691–698.CrossRef
go back to reference Matloff, E. T., Shappell, H., Brierley, K., Bernhardt, B. A., McKinnon, W., & Peshkin, B. N. (2000). What would you do? Specialists’ perspectives on cancer genetic testing, prophylactic surgery, and insurance discrimination. Journal of Clinical Oncology, 18(12), 2484–2492.CrossRef Matloff, E. T., Shappell, H., Brierley, K., Bernhardt, B. A., McKinnon, W., & Peshkin, B. N. (2000). What would you do? Specialists’ perspectives on cancer genetic testing, prophylactic surgery, and insurance discrimination. Journal of Clinical Oncology, 18(12), 2484–2492.CrossRef
go back to reference Nedelcu, R., Blazer, K. R., Schwerin, B. U., Gambol, P., Mantha, P., Uman, G. C., et al. (2004). Genetic discrimination: the clinician perspective. Clinical Genetics, 66(4), 311–317.CrossRef Nedelcu, R., Blazer, K. R., Schwerin, B. U., Gambol, P., Mantha, P., Uman, G. C., et al. (2004). Genetic discrimination: the clinician perspective. Clinical Genetics, 66(4), 311–317.CrossRef
go back to reference Pfeffer, N. L., Veach, P. M., & LeRoy, B. S. (2003). An investigation of genetic counselors’ discussion of genetic discrimination with cancer risk patients. Journal of Genetic Counseling, 12(5), 419–438.CrossRef Pfeffer, N. L., Veach, P. M., & LeRoy, B. S. (2003). An investigation of genetic counselors’ discussion of genetic discrimination with cancer risk patients. Journal of Genetic Counseling, 12(5), 419–438.CrossRef
go back to reference Reilly, P. R. (1999). Efforts to regulate the collection and use of genetic information. Archives of Pathology & Laboratory Medicine, 123(11), 1066–1070. Reilly, P. R. (1999). Efforts to regulate the collection and use of genetic information. Archives of Pathology & Laboratory Medicine, 123(11), 1066–1070.
go back to reference Rothstein, M. A. (2008). Currents in contemporary ethics. GINA, the ADA, and genetic discrimination in employment. The Journal of Law, Medicine & Ethics, 36(4), 837–840.CrossRef Rothstein, M. A. (2008). Currents in contemporary ethics. GINA, the ADA, and genetic discrimination in employment. The Journal of Law, Medicine & Ethics, 36(4), 837–840.CrossRef
go back to reference Stephenson, J. (1999). Genetic test information fears unfounded. JAMA, 282(23), 2197–2198.CrossRef Stephenson, J. (1999). Genetic test information fears unfounded. JAMA, 282(23), 2197–2198.CrossRef
Metadata
Title
Family Physicians’ Awareness and Knowledge of the Genetic Information Non-Discrimination Act (GINA)
Authors
Amanda L. Laedtke
Suzanne M. O’Neill
Wendy S. Rubinstein
Kristen J. Vogel
Publication date
01-04-2012
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 2/2012
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-011-9405-6

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