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.
Similar content being viewed by others
References
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.
Associated Press (April 28, 2010). Conn. woman alleges genetic discrimination at work. Boston Herald.com. Retrieved from: https://doi.org/www.bostonherald.com/news/national/northeast/view/20100428conn_woman_alleges_genetic_discrimination_at_work/srvc=home&position=recent
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.
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.
Billings, P. R. (2008). Beyond GINA. Nature Medicine, 14(8), 806.
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.
Domchek, S. M., Friebel, T. M., Singer, C. F., Evans, D. G., Lynch, H. T., Isaacs, C., et al. (2010). Association of risk-reducing surgery in BRCA1 or BRCA2 mutation carriers with cancer risk and mortality. JAMA, 304(9), 967–975. Retrieved from: https://doi.org/www.ncbi.nlm.nih.gov/projects/GeneTests/static/whatsnew/labdirgrowth.shtml
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.
Erwin, C. (2009). Behind of Genetic Information Nondiscrimination Act of 2008. American Journal of Nursing, 109(12).
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.
Gene Tests Database 2009. (1993–2010). National Institues of Health 2010. Retrieved from https://doi.org/www.ncbi.nlm.nih.gov/projects/GeneTests/static/whatsnew/labdirgrowth.shtml.
Genetic Information: Legal Issues Relating to Discrimination and Privacy. (2010). Paper presented at the National Conference of State Legislatures. Retrieved from: https://doi.org/www.ncsl.org/default.aspx?tabid=14374.
Genetic Information Nondiscrimination Act of 2008, Information for Researchers and Health Care Professionals (2009). Retrieved from: https://doi.org/www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/GINAInfoDoc.pdf.
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.
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.
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.
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.
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.
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.
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.
Lapham, E. V., Kozma, C., & Weiss, J. O. (1996). Genetic discrimination: perspectives of consumers. Science, 274(5287), 621–624.
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.
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.
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.
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.
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.
Reilly, P. R. (1999). Efforts to regulate the collection and use of genetic information. Archives of Pathology & Laboratory Medicine, 123(11), 1066–1070.
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.
Stephenson, J. (1999). Genetic test information fears unfounded. JAMA, 282(23), 2197–2198.
Author information
Authors and Affiliations
Corresponding author
Additional information
Support
Northwestern University Graduate Program of Genetic Counseling and Center for Medical Genetics, NorthShore University HealthSystem. This work was performed in partial fulfillment for a Master’s degree (ALL).
Prior Presentation
Family Practice Physicians’ Awareness and Knowledge of GINA. Platform presentation at the National Society of Genetic Counselors Annual Education Conference, October 17th, 2010. Dallas, TX.
Rights and permissions
About this article
Cite this article
Laedtke, A.L., O’Neill, S.M., Rubinstein, W.S. et al. Family Physicians’ Awareness and Knowledge of the Genetic Information Non-Discrimination Act (GINA). J Genet Counsel 21, 345–352 (2012). https://doi.org/10.1007/s10897-011-9405-6
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10897-011-9405-6