Concerns about insurance discrimination are common among patients pursuing genetic counseling and testing for hereditary cancer syndromes.1,2 Studies have consistently shown that fear of discrimination is a major reason why patients choose not to pursue genetic counseling and/or testing.1,2 This is especially true when the testing is expensive, as it often is for hereditary cancer syndromes.1 However, despite well-documented patient concerns and anecdotal reports of discrimination based on genetic information, there are little or no solid data to support these concerns.1,2,3,4 In fact, it has been shown that very few health insurers ask for or use presymptomatic genetic test results in their underwriting decisions.1,2 Furthermore, studies suggest that even individuals with a serious genetic condition who are presymptomatic have few, if any, problems securing health insurance.1,2 This may be because most health insurance policies are only in place for several years and therefore, there is little economic benefit in basing coverage decisions on a possible future disease risk.3
Life and disability insurance are two areas where concerns about genetic discrimination may be well founded since little or no legislative protection exists in these areas. 3 However, some argue that even these concerns are exaggerated. 3 One recent article suggests that for most genetic diseases, genetic risk alone in presymptomatic individuals would not prohibit them from obtaining affordable life insurance coverage. 3 This is based on the fact that the competitive insurance market encourages companies to accept moderate risks and that the excess mortality risk associated with some genetic diseases is no higher than the risk associated with some common, non-genetic health risks (i.e. cigarette smoking). 3
In May 2008, the long-awaited Genetic Information Nondiscrimination Act (GINA) was signed into law. 5, 6 This federal legislation is the first law of its kind to provide broad protection against genetic discrimination in group and individual health insurance and employment.5, 6 It is also the first federal law to outline processes for filing claims and seeking justice for individuals who have experienced genetic discrimination. 5, 6
Before GINA, a patchwork of federal and state laws tried to address genetic discrimination. The Health Insurance Portability and Accountability Act (HIPAA) of 1996 provided some restrictions on the use of genetic information by insurers. 5, 6It forbid exclusion, prohibited higher premiums and banned the use of genetic information as a preexisting condition. 5, 6 However, HIPAA and some state laws did not fully define genetic information, apply to individual health plans, protect predictive information, or provide avenues for seeking justice. 5, 6 GINA now sets the national minimum level of protection, replacing those state laws with weaker protections; however, it does not preempt those state laws that provide more extensive protection. 5, 6
GINA specifically prohibits issuers of health insurance (including group, individual and Medicare supplement policies) from using genetic information to:
- establish eligibility, contribution amounts and premium fees;
- specify the conditions of the policy;
- impose a preexisting condition exclusion.5, 6
GINA specifically prohibits employers, labor organizations, employment agencies and joint labor-management committees from using genetic information to:
- fire or refuse to hire an employee;
- discriminate against an employee with respect to compensation, promotions, or terms, conditions or privileges of employment;
- treat employees differently in admission to apprenticeships, training or retraining programs.5, 6
GINA also specifically prohibits employers and health insurers from requesting, requiring, disclosing or purchasing the results of a genetic test or genetic information. 5, 6
While GINA is the most comprehensive law of its kind, it is important to note that it does not apply to members of the US military, veterans obtaining healthcare through Veteran’s Administration, or the Indian Health Service. It does not prohibit insurers from using current health status to determine coverage or premiums. 5, 6 It also does not address life insurance, disability insurance, or long-term-care insurance. 5, 6
For more information about GINA or genetic discrimination, please see the following resources:
This website hosted by the Coalition for Genetic Fairness provides an overview of the Genetic Information Nondiscrimination Act (GINA).
Summary chart of what is and is not covered under the Genetic Information Nondiscrimination Act (GINA) prepared by the Genetic and Public Policy Center.
Complete text of the Genetic Information Nondiscrimination Act (GINA) bill (H.R. 493).
This website provides a good overview of the current federal legislation as well as the various bills that have been proposed and recommendations that have been made for future legislation. It also has a policy and legislation database that is searchable by content type (i.e. type of law), topic of interest, and source (i.e. state or country).
1. Journal of Law, Medicine and Ethics 2000; 28(3):245.
2. Seminars in Surgical Oncology 2000; 18:347-357.
3. Science 2002; 297: 195-197.
4. New England Journal of Medicine 2005; 353(9):865-867.
5. Community Oncology 2008;5:351-354
6. New England Journal of Medicine 2008; 358(25):2661-2663.