Cancer Genetic Counseling
Insurance Issues/Genetic Discrimination article
Update on Genetic Discrimination
Concerns about insurance discrimination are common among patients pursuing genetic counseling and testing for hereditary cancer syndromes. Studies have consistently shown that fear of discrimination is a major reason why patients choose not to pursue genetic counseling and/or testing. This is especially true when the testing is expensive, as it often is for hereditary cancer syndromes. However, despite well-documented patient concerns and anecdotal reports of discrimination based on genetic information, there is little or no solid data to support these concerns. In fact, it has been shown that very few health insurers ask for or use presymptomatic genetic test results in their underwriting decisions. Furthermore, studies suggest that even individuals with a serious genetic condition who are presymptomatic have few, if any, problems securing health insurance. 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. Federal and state legislation also offer some protection against genetic discrimination in health insurance and employment.
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. However, some argue that even these concerns are exaggerated. 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. 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).
Genetic discrimination has generated a great deal of federal and state legislative activity over the past decade. This will probably continue to be the case since many attempts at more comprehensive federal genetic discrimination legislation have been made and, so far, none have been approved. For the remainder of this article, we will review the current federal and Connecticut state legislation pertaining to genetic discrimination including what each of them covers and what gaps still exist.
Federal Legislation
Genetic Discrimination in Health Insurance
Health Insurance Portability and Accountability Act (HIPAA) of 1996
- Explicitly indicates that genetic information (including family history and the results of genetic testing) cannot be used as a pre-existing condition
- Prohibits insurance companies from denying continuation or renewal of coverage based on genetic information for people with individual or group insurance coverage
- Prohibits the use of genetic information to determine eligibility, set premiums, or charge individuals within a group different premiums
- Offers protection (i.e. cannot be denied coverage or charged higher premiums based on genetic information) for individuals changing from one group plan to another as long as they continue coverage under COBRA
- Does not protect people applying for individual health insurance coverage (thus self-employed or unemployed individuals may be particularly vulnerable)
Genetic Discrimination in Employment
Americans with Disabilities Act (ADA) of 1990
- Prohibits discrimination in any aspect of employment on the basis of a disability unless the disability prohibits adequate job performance
- Although the original ADA language does not specifically refer to genetic information, in 1995, the Equal Employment Opportunity Commission issued a ruling that states that the definition of disability under the ADA included protection for individuals with genetic mutations that predispose them to disease
- There is concern that this interpretation of the ADA may not hold up in court and therefore, presymptomatic individuals may not be adequately protected.
State Legislation
Overview (as of August 2007)
- 42 states have legislation providing some protection against genetic discrimination in health insurance
- 5 additional states and the district of Columbia provide more limited protection against genetic discrimination in health insurance
- 34 states have laws providing some protection of individuals against genetic discrimination in employment
- 26 states have legislation protecting the privacy of genetic information to some extent
- 17 states provide some level of protection against discrimination in disability insurance
- 16 states have laws providing limited protection against discrimination in life insurance
- 9 states have laws providing limited protection against discrimination in long term care insurance
- 3 states have no legislation regarding the privacy of genetic information or genetic discrimination
Connecticut
Genetic Discrimination in Health Insurance
Sec 38a-476 and 38a-816
- Make it illegal for health insurance providers (insurance companies, HMOs, hospital service corporations, health care center, fraternal benefit societies providing individual or group health insurance) to refuse to insure or continue to insure, limit the amount, extent, or kind of coverage, or charge a different rate for the same coverage on the basis of genetic information
- Prohibits the use of genetic information as a pre-existing condition in an otherwise asymptomatic individual
- However, Employee Retirement Income Security Act (ERISA) makes certain types of individual insurance plans (e.g. employer-provided self-funded health plans) exempt from state insurance regulations
Genetic Discrimination in Employment
Sec. 46a-60
- Prohibits employers, employment agencies and labor organizations from requiring or requesting genetic information from an employee, job applicant, or member
- Prohibits employers from firing or otherwise discriminating against any individual on the basis of genetic information
For More Information:
Fact Sheets by Mark A. Hall, JD, Wake Forest University
Websites:
Please see the Insurance legislation/genetic discrimination websites listed in our resources section.
References:
New England Journal of Medicine 2007; 356:20.
New England Journal of Medicine 2005; 353:9.
Science 2002; 297: 195-197.
American Journal of Human Genetics 2000; 66:293-307.
Journal of Law, Medicine and Ethics 2000; 28(3):245.
Seminars in Surgical Oncology 2000; 18:339-346.
Seminars in Surgical Oncology 2000; 18:347-357.