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Cancer Genetics Risk Assessment and Counseling (PDQ®): Genetics - Health Professional Information [NCI] - Ethical, Legal, and Social Implications

Table 3. Comparison of Federal Legislation Addressing Genetic Coverage, Limitations, and Protections

Law Coverage Limitations Protect All Americans
Adapted from Leib et al.[31]
Civil Rights Act of 1964 Employment only Does not apply to health insurance Yes
Applies in instances of discrimination based on genetic information if associated with race or ethnic groups Strong association with a racial or ethnic group for hereditary cancers is rare
Americans with Disabilities Act of 1990 Disabilities associated with manifesting genetic information Does not apply to health insurance Yes
Health Insurance Portability and Accountability Act of 1996 Group health insurance plans Does not stop insurers from requiring genetic tests Yes
Genetic information is not defined
Forbids excluding an individual in a group health plan due to genetic information Genetic information can be used for plan underwriting
Forbids premium increases for different group plan members Disclosure of genetic information is not restricted
Preexisting conditions can not include predictive genetic information Does not apply to individual health plans, unless covered by the portability provision
Executive Order 13145 of 2000 Forbids Federal employee workplace genetic discrimination Does not apply to health insurance No; excludes members of the United States military and anyone who is NOT a federal employee
Only applies to Federal employees
Genetic Information Nondiscrimination Act of 2008 (GINA) (Enacted in 2009) Forbids genetic discrimination in the workplace and in health insurance Civil suit is restricted to only those who have had all administrative remedies exhausted No; excludes members of the United States military, veterans obtaining health care through the Veteran's Administration, and the Indian Health Service
Genetic information broadly defined
Specific to group and individual insurance plans
Forbids use of genetic information in underwriting
Forbids requiring genetic testing by employers and insurers Does not cover life, disability, and long-term care insurance

Genetic Information Nondiscrimination Act 2008

GINA 2008 protects the provision of health insurance and employment against discrimination based on genetic information as follows:

  • Prohibits access to individuals' personal genetic information by insurance companies and by employers.[32]
  • Prohibits insurance companies from requesting that applicants for group or individual health coverage plans be subjected to genetic testing or screening and prohibits them from discriminating against health plan applicants based on individual genetic information.[32]
  • Does not prohibit medical underwriting based on current health status.[33]
  • Does not mandate coverage for medical tests or treatments.[33]
  • Does not interfere or limit treating health care providers, including those employed or affiliated with health plans, from requesting or notifying individuals about genetic tests.[33]
  • Prohibits employers from using genetic information to refuse employment, and prohibits them from collecting employees' personal genetic information without their explicit consent.[32]
  • Prohibits employment agencies from failing or refusing to refer a candidate on the basis of genetic information.[34]
  • Prohibits labor organizations from refusing membership based on a member's genetic make-up.[34]
  • Does not prohibit occupational testing for toxic monitoring programs, employer-sponsored wellness programs, administration of federal and state Family and Medical Leave Laws, and certain cases of inadvertent acquisition of genetic information.[33]
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