More than a decade after the Genetic Information Nondiscrimination Act (GINA) was passed, there is a paucity of research on the general public’s awareness of GINA. This study’s objective was to assess knowledge of GINA and concerns of genetic discrimination.
A quota-based sample of US adults (N = 421) was recruited via Qualtrics Research Services to complete an online survey.
Overall, participants had a mean age of 43.1 (SD = 13.9), 51.8% identified as female, 63.1% identified as non-Hispanic White, and 38.4% had ≥4-year college degree. Respondents reported relatively low subjective knowledge of GINA (M = 3.10, SD = 1.98; 7-point Likert scale). Among respondents reporting high subjective knowledge of GINA (16.2%), 92.6% incorrectly reported or did not know that GINA does not covers life, long-term care, and disability insurance, and this number was 82.4% for auto or property insurance. Respondents were relatively likely to decline genetic testing due to concerns about results being used to determine eligibility for employment (M = 4.68, SD = 1.89) or health insurance (M = 4.94, SD = 1.73). There were few consistent demographic associations with either subjective or objective knowledge of GINA.
This study highlights continued public concern about genetic discrimination and a lack of awareness and understanding of GINA and its scope of protections.
This is a preview of subscription content
Subscribe to Journal
Get full journal access for 1 year
We are sorry, but there is no personal subscription option available for your country.
Get time limited or full article access on ReadCube.
All prices are NET prices.
The survey instrument is available in the Supplementary Materials and the survey data and Stata syntax is available upon request from the corresponding author.
Faces of Genetic Discrimination How Genetic Discrimination Affects Real People. Washington, DC: National Partnership for Women & Families on behalf of the Coalition for Genetic Fairness; 2004. http://go.nationalpartnership.org/site/DocServer/FacesofGeneticDiscrimination.pdf.
Hall MA, McEwen JE, Barton JC, Walker AP, Howe EG, Reiss JA, et al. Concerns in a primary care population about genetic discrimination by insurers. Genet Med. 2005;7:311–6.
Thompson HS, Valdimarsdottir HB, Duteau-Buck C, Guevarra J, Bovbjerg DH, Richmond-Avellaneda C, et al. Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women. Cancer Epidemiol Biomarkers Prev. 2002;11:1579–85.
Sterling R, Henderson GE, Corbie-Smith G. Public willingness to participate in and public opinions about genetic variation research: a review of the literature. Am J Public Health. 2006;96:1971–8.
Peterson EA, Milliron KJ, Lewis KE, Goold SD, Merajver SD. Health insurance and discrimination concerns and BRCA1/2 testing in a clinic population. Cancer Epidemiol Biomarkers Prev. 2002;11:79–87.
Sankar P, Wolpe PR, Jones NL, Cho M. How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States. Community Genet. 2006;9:78–86.
Armstrong K, Weber B, FitzGerald G, Hershey JC, Pauly MV, Lemaire J, et al. Life insurance and breast cancer risk assessment: Adverse selection, genetic testing decisions, and discrimination. Am J Med Genet A. 2003;120A:359–64.
The Genetic Information Non-Discrimination Act. Public Law 110-223. http://www.gpo.gov/fdsys/pkg/PLAW-110publ233/pdf/PLAW-110publ233.pdf Accessed 8 November 2019.
National Human Genome Research Institute. Genetic discrimination. https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination. Accessed 5 November 2020.
Prince AE, Roche MI. Genetic information, non-discrimination, and privacy protections in genetic counseling practice. J Genet Couns. 2014;23:891–902.
Baruch S, Hudson K. Civilian and military genetics: nondiscrimination policy in a post-GINA world. Am J Hum Genet. 2008;83:435–44.
Allain DC, Friedman S, Senter L. Consumer awareness and attitudes about insurance discrimination post enactment of the Genetic Information Nondiscrimination Act. Fam Cancer. 2012;11:637–44.
Laedtke AL, O’Neill SM, Rubinstein WS, Vogel KJ. Family physicians’ awareness and knowledge of the Genetic Information Non-Discrimination Act (GINA). J Genet Couns. 2012;21:345–52.
Wilson Steck MB, Eggert JA, Parker VG, et al. Assessing awareness of the Genetic Information Nondiscrimination Act of 2008 (GINA) among nurse practitioners: a pilot study. Int Arch. Nurs Health Care. 2016;2:1–6.
Pamarti AK. Genetic Information Nondiscrimination Act (GINA) and its affect [sic] on genetic counseling practice: a survey of genetic counselors. Master’s thesis, Brandeis University, 2011.
Cragun D, Weidner A, Kechik J, Pal T. Genetic testing across young Hispanic and non-Hispanic white breast cancer survivors: facilitators, barriers, and awareness of the Genetic Information Non-discrimination Act. Genet Test Mol Biomarkers. 2019;23:75–83.
Dorsey ER, Darwin KC, Nichols PE, Kwok JH, Bennet C, Rosenthal LS, et al. Knowledge of the Genetic Information Nondiscrimination Act among individuals affected by Huntington disease. Clin Genet. 2013;84:251–7.
Huang MY, Huston SA, Perri M. Awareness of the US Genetic Information Nondiscrimination Act of 2008: an online survey. J Pharm Health Serv Res. 2013;4:235–8.
Parkman AA, Foland J, Anderson B, Duquette D, Sobotka H, Lynn M, et al. Public awareness of genetic nondiscrimination laws in four states and perceived importance of life insurance protections. J Genet Couns. 2015;24:512–21.
Amendola LM, Robinson JO, Hart R, Biswas S, Lee K, Bernhardt BA, et al. Why patients decline genomic sequencing studies: experiences from the CSER Consortium. J Genet Couns. 2018;27:1220–7.
Robinson JO, Carroll TM, Feuerman LZ, Perry DL, Hoffman-Andrews L, Walsh RC, et al. Respondents and study decliners’ perspectives about the risks of participating in a clinical trial of whole genome sequencing. J Empir Res Hum Res Ethics. 2016;11:21–30.
Fusina L. Impact of GINA on physician referrals for genetic testing for cancer predisposition. Master’s thesis, Mount Sinai School of Medicine of New York University, 2009.
Huizenga CR, Lowstuter K, Banks KC, Lagos VI, Vandergon VO, Weitzel JN. Evolving perspectives on genetic discrimination in health insurance among health care providers. Fam Cancer. 2010;9:253–60.
Matloff ET, Bonadies DC, Moyer A, Brierley KL. Changes in specialists’ perspectives on cancer genetic testing, prophylactic surgery and insurance discrimination: then and now. J Genet Couns. 2014;23:164–71.
Matloff ET, Shappell H, Brierley K, Bernhardt BA, McKinnon W, Peshkin BN. What would you do? Specialists’ perspectives on cancer genetic testing, prophylactic surgery, and insurance discrimination. J of Clin Oncol. 2000;18:2484–92.
Green RC, Lautenbach D, McGuire AL. GINA, genetic discrimination, and genomic medicine. N Engl J Med. 2015;372:397–9.
Iyer R, Koleva S, Graham J, Ditto P, Haidt J. Understanding libertarian morality: The psychological dispositions of self-identified libertarians. PLoS One. 2012;7:e42366.
Gornick MC, Scherer AM, Sutton EJ, Ryan KA, Exe NL, Li M, et al. Effect of public deliberation on attitudes toward return of secondary results in genomic sequencing. J Genet Couns. 2017;26:122–32.
Suter SM. GINA at 10 years: the battle over ‘genetic information’ continues in court. J Law Biosci. 2018;5:495–526.
Areheart BA, Roberts JL. GINA, big data, and the future of employee privacy. Yale Law J. 2019;128:710–90.
McGuire AL, Majumder MA. Two cheers for GINA? Genome Med. 2009;1:6.1–3.
Wauters A, Hoyweghen IV. Global trends on fears and concerns of genetic discrimination: a systematic literature review. Am J Hum Genet. 2016;61:275–82.
Clayton EW, Halverson CM, Sathe NA, Malin BA. A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States. PLoS One. 2018;13:e0204417.
Anderson J, Lewis ACF, Prince AER. The problems with patchwork: state approaches to regulating insurer use of genetic information. DePaul J Health Care Law. 2021;22:1–40.
Prince AER, Uhlmann WR, Suter SM, Scherer AM. Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA). Forthcoming (on file with authors).
Henderson GE, Wolf SM, Kuczynski KJ, Joffe S, Sharp RR, Parsons DW, et al. The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations. J Law Med Ethics. 2014;42:344–55.
Research reported in this publication was supported by the National Human Genome Research Institute of the National Institutes of Health under Award Number R00HG008819. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The authors would like to thank the Iowa Social Science Research Center for their survey support.
The authors declare no competing interests.
The survey received approval as an exempt study by the University of Iowa institutional review board (IRB). At the beginning of the survey respondents were informed of the voluntary nature of the study, assured that no personal information would be collected, and provided with contact information for the principal investigator and IRB. Consent was presumed for those who continued to complete the survey. Compensation of a cash honorarium was provided through Qualtrics to those who completed the entire survey.
Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Unfortunately the part Results in the abstract was given incorrect. The correct text is given below. RESULTS: Overall, participants had a mean age of 43.1 (SD = 13.9), 51.8% identified as female, 63.1% identified as non-Hispanic White, and 38.4% had ≥4-year college degree. Respondents reported relatively low subjective knowledge of GINA (M = 3.10, SD = 1.98; 7-point Likert scale). Among respondents reporting high subjective knowledge of GINA (16.2%), 92.6% incorrectly reported or did not know that GINA does not covers life, long-term care, and disability insurance, and this number was 82.4% for auto or property insurance. Respondents were relatively likely to decline genetic testing due to concerns about results being used to determine eligibility for employment (M = 4.68, SD = 1.89) or health insurance (M = 4.94, SD = 1.73). There were few consistent demographic associations with either subjective or objective knowledge of GINA.
About this article
Cite this article
Lenartz, A., Scherer, A.M., Uhlmann, W.R. et al. The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage. Genet Med 23, 2324–2334 (2021). https://doi.org/10.1038/s41436-021-01268-w