Ader, T., Susswein, L. R., Callanan, N. P., & Evans, J. P. (2009). Attitudes and practice of genetic counselors regarding anonymous testing for BRCA1/2. Journal of Genetic Counseling, 18
(6), 606–617.CrossRefPubMedGoogle Scholar
Allain, D. C., Friedman, S., & Senter, L. (2012). Consumer awareness and attitudes about insurance discrimination post enactment of the genetic information nondiscrimination Act. Familial Cancer, 11
, 637–644.CrossRefPubMedGoogle Scholar
Barlow-Stewart, K., Taylor, S. D., Treloar, S. A., Stranger, M., & Otlowski, M. (2009). Verification of consumers’ experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing. Genetics in Medicine, 11
(3), 193–201.CrossRefPubMedGoogle Scholar
Bernhardt, B. A., Zayac, C., & Pyeritz, R. E. (2011). Why is genetic screening for autosomal dominant disorders underused in families? The case of hereditary hemorrhagic telangiectasia. Genetics in Medicine, 13
(9), 812–820.PubMedCentralCrossRefPubMedGoogle Scholar
Centers for Disease Control and Prevention. (2010). 2010 BRFSS Summary Data Quality Report, Version #1, Table 11: BRFSS Outcome Rates by State. ftp://ftp.cdc.gov/pub/data/brfss/2010_summary_data_quality_report.pdf
. Accessed: December 5, 2013.
Clyne, M., Schully, S.D., Dotson, W.D., Douglas, M.P., Gwinn, M., Kolor, K., et al. (2014). Horizon scanning for translational genomic research beyond bench to bedside. Genetics in Medicine.
Cogent Research. (2010). Cogent genomics, attitudes & trends study
(5th ed.). Cambridge: Cogent Research.Google Scholar
Connecticut General Statute § 46a-60: Discriminatory employment practices prohibited.
Connecticut General Statutes § 38a-476: Preexisting condition coverage.
Connecticut General Statutes § 38a-816: Unfair practice prohibited.
Disability Rights Legal Center, Cancer Legal Resource Center. (2012). Regulation of Genetic Information in Life, Long Term Care, and Disability Insurances, 50 State Survey.
Disability Rights Legal Center, Cancer Legal Resource Center. (2012). Definition of Genetic Information in State Laws.
Dorsey, E. R., Darwin, K. C., Nichols, P. E., Kwok, J. H., Bennet, C., Rosenthal, L. S., et al. (2013). Knowledge of the genetic information nondiscrimination Act among individuals affected by Huntington disease. Clinical Genetics, 84
(3), 251–257.CrossRefPubMedGoogle Scholar
Genetic Information Nondiscrimination Act of 2008, H.R. 493, 110th Congress.
Haga, S. B., Carrig, M. M., O’Daniel, J. M., Orlando, L. A., Killeya-Jones, L. A., Ginsburg, G. S., & Cho, A. (2011). Genomic risk profiling: attitudes and use in personal and clinical care of primary care physicians who offer risk profiling. Journal of General Internal Medicine, 26
(8), 834–840. doi:10.1007/s11606-011-1651-7
. Epub 2011 Feb 11.PubMedCentralCrossRefPubMedGoogle Scholar
Health and Human Services. (2009). “GINA”, The Genetic Information Act of 2008, Information for Researchers and Health Care Professionals.
Health Insurance Portability and Accountability Act of 1996, H.R. 3103, 104th Congress.
Huizenga, C. R., Lowstuter, K., Banks, K. C., Lagos, V. I., Vandergon, V. O., & Weitzel, J. N. (2010). Evolving perspectives on genetic discrimination in health insurance among health care providers. Familial Cancer, 9
(2), 253–260.CrossRefPubMedGoogle Scholar
Iverson, E., Celious, A., Kennedy, C. R., Shehane, E., Eastman, A., Warren, V., et al. (2013). Perspectives of surrogate decision makers for critically ill patients regarding gene variation research. Genetics in Medicine, 15
(5), 368–373.CrossRefPubMedGoogle Scholar
Joly, Y., Burton, H., Knoppers, B.M., Feze, I.N., Dent, T., Pashayan, N., et al. (2013a). Life insurance: genomic stratification and risk classification. European Journal of Human Genetics.
Joly, Y., Ngueng Feze, I., & Simard, J. (2013b). Genetic discrimination and life insurance: a systematic review of the evidence. BMC Medicine, 11
, 25.PubMedCentralCrossRefPubMedGoogle Scholar
Kolor, K., Duquette, D., Zlot, A., Foland, J., Anderson, B., Giles, R., Wrathall, J., & Khoury, M. (2012). Public awareness and use of direct-to-consumer personal genomic tests from four state population-based surveys, and implications for clinical and public health practice. Genetics in Medicine, 14
, 860–867.CrossRefPubMedGoogle Scholar
Laedtke, A. L., O’Neill, S. M., Rubinstein, W. S., & Vogel, K. J. (2012). Family physicians’ awareness and knowledge of the Genetic Information Nondiscrimination Act (GINA). Journal of Genetic Counseling, 21
(2), 345–352. doi:10.1007/s10897-011-9405-6
. Epub 2011 Sep 7.CrossRefPubMedGoogle Scholar
Levy, D. E., Garber, J. E., & Shields, A. E. (2009). Guidelines for genetic risk assessment of hereditary breast and ovarian cancer: early disagreements and low utilization. Journal of General Internal Medicine, 24
(7), 822–828.PubMedCentralCrossRefPubMedGoogle Scholar
Matloff ET, Bonadies DC, Moyer A, Brierley KL. (2013). Changes in specialists’ perspectives on cancer genetic testing, prophylactic surgery and insurance discrimination: then and now. Journal of Genetic Counseling.
Michigan Compiled Laws § 333.17020, Michigan Public Act 29 of 2000.
Michigan Compiled Laws § 37.1201, Michigan Public Act 32 of 2000.
Michigan Compiled Laws § 550.1401, Michigan Public Act 26 of 2000.
National Conference of State Legislatures. (2008). Genetic Privacy Laws. http://ncsl.org/research/health/genetic-privacy-laws.aspx
National Human Genome Research Institute. (2012). Existing Federal Anti-Discrimination Laws and How They Apply to Genetics. http://www.genome.gov/12513979#al-2
Nwulia, E. A., Hipolito, M. M., Aamir, S., Lawson, W. B., Nurnberger, J. I., Jr., & Consortium, B. G. S. (2011). Ethnic disparities in the perception of ethical risks from psychiatric genetic studies. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 156B
(5), 569–580.CrossRefGoogle Scholar
Ohio Revised Code §§ 1751.64 and 1751.65.
Ohio Revised Code § 3901.491.
Ohio Revised Code § 3901.501.
Oregon Revised Statute § 192.531-192.549.
Oregon Revised Statute §§ 659a.300 and 659a.303
Oregon Revised Statute § 743.730.
Oregon Revised Statute § 746.135-746.136.
Otlowski, M., Taylor, S., & Bombard, Y. (2012). Genetic discrimination: international perspectives. Annual Review of Genomics and Human Genetics, 13
, 433–434. doi:10.1146/annurev-genom-090711-163800
Parmarti, AK. (2011). Genetic Information Nondiscrimination Act (GINA) and Its Affect on Genetic Counseling Practice: A Survey of Genetic Counselors
. (Master’s thesis). Retrieved from https://bir.brandeis.edu/bitstream/handle/10192/24364/Parmarti_thesis_GINA%20survey.pdf?sequence=1
Patient Protection and Affordable Care Act of 2010, H.R. 3590, 111th Congress.
Quillin, J. M., Krist, A. H., Gyure, M., Corona, R., Rodriguez, V., Borzelleca, J., & Bodurtha, J. N. (2014). Patient-reported hereditary breast and ovarian cancer in a primary care practice. Journal of Community Genetics, 5
(2), 179–183.PubMedCentralCrossRefPubMedGoogle Scholar
Ready, K., Arun, B. K., Schmeler, K. M., Uyei, A., Litton, J. K., Lu, K. H., Suc, C. C., & Peterson, S. K. (2011). Communication of BRCA1 and BRCA2 genetic test results to health care providers following genetic testing at a tertiary care center. Familial Cancer, 10
(4), 673–679.CrossRefPubMedGoogle Scholar
Sheppard, V.B., Graves, K.D., Christopher, J., Hurtado-de-Mendoza, A., Talley, C., Williams, K.P. (2013). African American Women’s Limited Knowledge and Experience with Genetic Counseling for Hereditary Breast Cancer. Journal of Genetic Counseling.
Shostak, S., Zarhin, D., & Ottman, R. (2011). What’s at stake? Genetic information from the perspective of people with epilepsy and their family members. Social Science and Medicine, 73
(5), 645–654.PubMedCentralPubMedGoogle Scholar
Simon, M. S., & Petrucelli, N. (2009). Hereditary breast and ovarian cancer syndrome: the impact of race on uptake of genetic counseling and testing. Methods in Molecular Biology, 471
, 487–500.CrossRefPubMedGoogle Scholar
U.S. Congressional Research Service. The Genetic Information Nondiscrimination Act of 2008 and the Patient Protection and Affordable Care Act of 2010: Overview and Legal Analysis of Potential Interactions (R41314: Dec 21, 2011), by Sarata AK, DeBergh JV, Staman J. http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/CRS_GINA_and_ACA.pdf
. Accessed: November 27, 2013.