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The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage

A Correction to this article was published on 27 August 2021

This article has been updated

Abstract

Purpose

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.

Methods

A quota-based sample of US adults (N = 421) was recruited via Qualtrics Research Services to complete an online survey.

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.

Conclusion

This study highlights continued public concern about genetic discrimination and a lack of awareness and understanding of GINA and its scope of protections.

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Fig. 1: Objective knowledge of the Genetic Nondiscrimination Act (GINA) (N = 421).
Fig. 2: Participant responses to questions about the use of genetic information (N = 421).

Data availability

The survey instrument is available in the Supplementary Materials and the survey data and Stata syntax is available upon request from the corresponding author.

Change history

References

  1. 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.

  2. 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.

    Article  Google Scholar 

  3. 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.

    PubMed  Google Scholar 

  4. 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.

    Article  Google Scholar 

  5. 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.

    PubMed  Google Scholar 

  6. 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.

    PubMed  PubMed Central  Google Scholar 

  7. 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.

    Article  Google Scholar 

  8. 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.

  9. National Human Genome Research Institute. Genetic discrimination. https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination. Accessed 5 November 2020.

  10. Prince AE, Roche MI. Genetic information, non-discrimination, and privacy protections in genetic counseling practice. J Genet Couns. 2014;23:891–902.

    Article  Google Scholar 

  11. Baruch S, Hudson K. Civilian and military genetics: nondiscrimination policy in a post-GINA world. Am J Hum Genet. 2008;83:435–44.

    CAS  Article  Google Scholar 

  12. 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.

    Article  Google Scholar 

  13. 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.

    Article  Google Scholar 

  14. 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.

    Google Scholar 

  15. 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.

  16. 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.

    Article  Google Scholar 

  17. 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.

    CAS  Article  Google Scholar 

  18. 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.

    Article  Google Scholar 

  19. 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.

    Article  Google Scholar 

  20. 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.

    Article  Google Scholar 

  21. 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.

    Article  Google Scholar 

  22. 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.

  23. 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.

    Article  Google Scholar 

  24. 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.

    Article  Google Scholar 

  25. 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.

    CAS  Article  Google Scholar 

  26. Green RC, Lautenbach D, McGuire AL. GINA, genetic discrimination, and genomic medicine. N Engl J Med. 2015;372:397–9.

    CAS  Article  Google Scholar 

  27. 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.

    CAS  Article  Google Scholar 

  28. 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.

    Article  Google Scholar 

  29. Suter SM. GINA at 10 years: the battle over ‘genetic information’ continues in court. J Law Biosci. 2018;5:495–526.

    Article  Google Scholar 

  30. Areheart BA, Roberts JL. GINA, big data, and the future of employee privacy. Yale Law J. 2019;128:710–90.

    Google Scholar 

  31. McGuire AL, Majumder MA. Two cheers for GINA? Genome Med. 2009;1:6.1–3.

    Article  Google Scholar 

  32. 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.

    CAS  Article  Google Scholar 

  33. 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.

    Article  Google Scholar 

  34. 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.

    Google Scholar 

  35. 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).

  36. 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.

    Article  Google Scholar 

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Acknowledgements

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.

Author information

Authors and Affiliations

Authors

Contributions

Conceptualization: A.L., A.M.S., W.R.U., S.M.S., C.A.H., A.E.R.P. Formal analysis: A.M.S., A.E.R.P. Funding acquisition: A.E.R.P. Writing—original draft: A.L., C.A.H., A.E.R.P. Writing—review & editing: A.L., A.M.S., W.R.U., S.M.S., C.A.H., A.E.R.P.

Corresponding author

Correspondence to Anya E. R. Prince.

Ethics declarations

Competing interests

The authors declare no competing interests.

Ethics declaration

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.

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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.

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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

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