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Genetic Information Nondiscrimination Act (GINA) of 2008
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Genetic Information Nondiscrimination Act (GINA) of 2008

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  • 1. Genetic Information Nondiscrimination Act (GINA) of 2008 The Genetic Information Nondiscrimination Act (GINA) of 2008 [http://frwebgate.access.gpo.gov/cgi- bin/getdoc.cgi?dbname=110_cong_public_laws&docid=f:publ233.110 ] is a federal law that protects individuals against genetic discrimination in the areas of health insurance and employment. Regulations must be promulgated by a number of federal agencies by May 2009. This law (Public Law 110-233) will be enforced by the Department of Health and Human Services (HHS), the Department of Labor, the Department of Treasury, and the Equal Employment Opportunity Commission (EEOC). There are two parts to this bill: health insurance provisions and employment provisions. The health insurance provisions of the law take effect on May 21, 2009, while the employment provisions take effect on November 21, 2009. GINA Protects against Genetic Discrimination in Health Insurance It is important to understand that GINA protects an individual’s predictive genetic information—that is, information about a condition or disease that an individual may be more likely to develop in the future. The health insurance provisions of the law do not protect the individual from discrimination based on a genetic disease or condition that an individual already has. However, GINA does protect information regarding the history of manifested disease in an individual’s family members. Protections in GINA apply to people who have purchased individual or family coverage, people who get coverage through their jobs (i.e., those who are enrolled in an employer-based group health plan), 1 and people buying Medicare supplemental (“Medigap”) policies. They do not apply to people who have coverage through the military or the Department of Veterans Affairs (VA). The following is a list of some of the protections provided by GINA: • An individual cannot be required to provide genetic information about him or herself, a family member, or a fetus to a health insurer or health plan. • Insurers and health plans cannot set premiums for an individual or a group based on genetic information. • Health insurers and health plans cannot use genetic information to determine if someone is eligible to enroll. In fact, insurers and health plans cannot intentionally collect genetic information prior to enrolling an individual or group. If an insurer or health plan receives genetic information incidentally when purchasing or collecting other information, it cannot use that information in their underwriting decisions. • Insurers and health plans cannot use genetic information as the basis for a pre-existing condition exclusion in either the individual or the Medigap market. However, insurers can use the manifestation of a disease or disorder as the basis for a pre-existing condition exclusion. • An individual and/or an individual’s family member are protected from being required to undergo genetic testing. Health insurers and health plans can neither ask nor require that an individual or family member undergo such testing, though exceptions are made for research, as described below. However, a health care professional who is providing care may request that the individual or family member undergo a test. • Genetic information is considered health information and is protected under HIPAA privacy laws. Like other health information, it cannot be disseminated without the consumer’s permission, and the consumer has a right to confidentiality of the information in his or her medical record. The consumer also has a right of access to the information in his or her medical record: the consumer may inspect it or obtain a copy.
  • 2. As stated above, individuals and family members are protected from being required to undergo genetic testing. Genetic tests, as referred to in the law, are tests that assess genotypes, mutations, or chromosomal changes. The following are examples 2 that fall under the law’s definition of genetic tests: • Tests for breast cancer (BRCA1, BRCA2); • Tests for colon cancer (HNPCC); • Tests for Huntington’s Disease mutations; • Classifications of genetic properties of an existing tumor to help determine therapy; and • Carrier screening for disorders such as cystic fibrosis, sickle cell anemia, spinal muscular atrophy, and fragile X syndrome. The following are examples of services that are not considered to be genetic tests: 3 • Routine blood counts, • Routine cholesterol tests, and • Liver function tests. As mentioned above, health insurers may request genetic testing for research purposes, and an individual may voluntarily comply. However, the insurer must explain that if the individual chooses not to comply, the decision will not affect the person’s premium or enrollment status. Furthermore, if genetic information is collected in this instance, it can be used only for research purposes and not for underwriting. When insurers attempt to determine payment for a specific claim, an individual may be required to provide the minimum amount of genetic information necessary for the insurer to make this decision. For example, according to the Coalition for Genetic Fairness, an insurer might request information about an individual’s BRCA status—a genetic test that shows a woman’s risk of developing breast cancer—to determine coverage for a prophylactic (preventive) mastectomy. If the individual does not wish to provide such information to her or his health insurer, she or he can choose to pay for the test, treatment, or service out of pocket. Plans that violate the law and do not correct their practices can be fined. Consumers have several avenues for filing complaints, as follows: • Consumers can complain to their state insurance department about either employer-based health insurance or individually purchased health insurance plans that are licensed in their state. • If a consumer believes that an employer-based plan has violated the law, he or she can also file a complaint with The Employee Benefit Security Administration (within the Department of Labor) by calling 1-866-444-EBSA. • If a consumer believes that an individually purchased plan violates the law, and if the consumer has not received a satisfactory response from the state insurance department, he or she can file a complaint with the Centers for Medicare and Medicaid Services (CMS, within HHS) by sending an e-mail to phig@cms.hhs.gov. Though GINA is a federal law, it provides only a baseline for protections. If an individual’s state of residence has better protections, GINA does not preempt state law. To find out more about your state law as it pertains to the use of genetic information in health insurance, see the National Conference of State Legislators’ Web page on genetics and health insurance atwww.ncsl.org/programs/health/genetics/ndishlth.htm. In some states, if an insurer fails to comply with a state law, the state insurance commissioner has the ability to suspend an insurer’s license or impose high administrative fines. For a list of these states, see www.ncsl.org/programs/health/genetics/healthinsenforce.htm.
  • 3. GINA Also Protects against Genetic Discrimination in the Workplace Individuals have the right to ensure that their genetic information remains confidential. If an employer, employment agency, labor organization, or joint labor-management committee obtains an individual’s genetic information, it must be maintained in separate forms and files. The information can be disclosed only if an individual has submitted a written request or in certain narrowly defined circumstances. 4 GINA includes the following provisions to protect against genetic discrimination in the workplace: • An individual is protected from an employer using genetic information as a basis for making decisions regarding hiring, promotion, terms or conditions, privileges of employment, compensation, or termination. • An individual is protected from being deprived of employment opportunities on the basis of genetic information. • An employer, an employment agency, a labor organization, or a training program may not request, require, or purchase genetic information about the individual or individual’s family members, except in rare instances. (See Title II, Section 203.) • An individual is protected from an employer refusing to refer her or him based on genetic information. • An individual is protected from an employer, a labor organization, or a joint labor-management committee making decisions based on genetic information concerning admission to or employment in any program for apprenticeship or training and retraining, including on-the-job training. • An individual cannot be excluded or expelled from membership in a labor organization because of genetic information. Who Is Not Protected by GINA? Because the employment provisions in GINA apply only to those employers that are covered under the Americans with Disabilities Act (ADA) (see www.ada.gov/pubs/ada.htm) and Title VII of the Civil Rights Act of 1964 (see www.eeoc.gov/policy/vii.html), individuals who work at places with fewer than 15 employees are not protected. Furthermore, members of the United States military, veterans who obtain health care through the VA, and those covered by the Indian Health Service are not protected under GINA. Additional Resources: For the full text of the law, go to http://frwebgate.access.gpo.gov/cgi- bin/getdoc.cgi?dbname=110_cong_public_laws&docid=f:publ233.110. The health insurance provisions of the law are codified in the following titles and sections of the United States Code, available online at www.gpoaccess.gov/uscode: • 29 USC §1182 • 29 USC §1191b (d) • 29 USC §1132 • 42 USC §300gg • 26 USC §9802 • 26 USC §9832 • 42 USC §1395ss
  • 4. • 42 USC §1320d Coalition for Genetic Fairness: What Does GINA Mean? A Guide to the Genetic Information Nondiscrimination Act www.geneticfairness.org/ginaresource.html Genetics and Public Policy Center: The Genetic Information Nondiscrimination Act Issue Brief www.dnapolicy.org/images/issuebriefpdfs/5558_Genetic_Discrimination_Issue_Brief.pdf National Human Genome Research Institute: Genetic Information Nondiscrimination Act: 2007-2008 www.genome.gov/24519851 New England Journal of Medicine: Keeping Pace with the Times–The Genetic Information Nondiscrimination Act of 2008 http://content.nejm.org/cgi/reprint/358/25/2661.pdf U.S. Department of Energy, Office of Science: Genetics Privacy and Legislation www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml U.S. Department of Health and Human Services: Protecting Your Health Insurance Coverage http://www.cms.hhs.gov/HealthInsReformforConsume/Downloads/protect.pdf. 1 Some state and local plans for government workers can file for limited exceptions to these rules. For more information, see the overview and procedures on the ”Self Funded and Nongovernmental Plans” section of the CMS Web site at http://www.cms.hhs.gov/SelfFundedNonFedGovPlans/. 2 Kathy L. Hudson, M. K. Holohan, and Francis S. Collins, “Keeping Pace with the Times–The Genetic Information Nondiscrimination Act of 2008,” New England Journal of Medicine 358, no. 25 (2008): 2,661- 2,663. 3 Ibid. 4 The information can be disclosed in the following instances only: (1) if an individual has submitted a written request, (2) if a researcher is conducting research in compliance with federal regulations that protect confidentiality, (3) if there is a court order, (4) as part of a government investigation of compliance with GINA, (5) to certify compliance with family and medical leave laws, or (6) to a public health agency with regard to a hazardous and contagious disease.