Fear of genetic discrimination is often a stated barrier to referral to genetic counseling services and to willingness to undergo genetic testing.1,2 As a result, when the Genetic Information Nondiscrimination Act (GINA) was signed almost 4 years ago by President George W. Bush, many felt that this would be the panacea for individuals concerned about discrimination. GINA was the first federal legislation providing protections against genetic discrimination by health insurers and employers. While GINA has granted many important protections, the law is only as good as its interpretation and enforcement. This is especially true in the oncology setting.
Oncology nurses interact with patients at all stages of the genetic testing process: prior to being identified as at-risk for a hereditary cancer syndrome, during genetic counseling and testing, and after being diagnosed with a hereditary cancer syndrome. Therefore, it is important for oncology nurses to have a basic understanding of GINA as it applies to patients in the various stages of identification. Not only can oncology nurses help minimize misconceptions about genetic discrimination, they can also assist patients in being proactive after undergoing cancer genetic testing to fully maximize the protections GINA provides.
Overview of GINA
John is a 40-year-old male who was found to have over 50 adenomatous polyps on a screening colonoscopy. Due to numerous adenomatous colonic polyps, he underwent a colectomy and was found to have an additional 83 adenomatous polyps. Genetic testing revealed a mutation in the APC gene and confirmed a diagnosis of familial adenomatous polyposis. You receive a request for medical records from his insurance company as it is reviewing the claim to determine if colectomy was indicated. What should you do?
One of the most notable parts of GINA is prohibition of both health insurers and employers gaining access to an individual’s genetic information. Discriminatory intent can often be difficult to prove, and this provision helps ensure that a person cannot discriminate, even subconsciously, against the individual. However, the provision is only completely effective if these companies truly do not get the information. Medical records are rife with genetic information, including family history and genetic test results. Therefore, in order to ensure full protection of the law, healthcare providers and individuals with hereditary cancer syndromes should be aware of how medical records are handled.
Tabatha is a 58-year-old female diagnosed with colorectal cancer at age 56. She has a germline mutation in the MSH2 gene and, thus, a diagnosis of Lynch syndrome. Tabatha is worried about what her diagnosis means for her children. Additionally, she confides that she doesn’t think they should be tested for the MSH2 mutation because she is worried that they won’t be able to get life insurance.
Under GINA, the medical history of family members cannot be used by health insurers to discriminate against an individual. This fact is important to mention to patients such as Tabatha, who are worried about their children’s well-being. If Tabatha’s children are applying for health insurance, they do not need to disclose their mother’s colorectal or MSH2 diagnosis on the application. If the health insurer somehow gets information about the colorectal cancer or MSH2 mutation, they cannot use this information to change premium amounts, deny coverage, change benefits, or otherwise discriminate.
in many state laws regarding life, disability, and long-term care insurance only includes information about genetic test results, not family history. Therefore, if the insurer wants to take genetic predispositions into account for enrollment, they unfortunately probably already have the information through family medical history. Therefore, additional information from a genetic test may not change the outcome of insurance, but it can greatly assist medical treatment options. In fact, a negative test result may even help an individual get these insurances despite a family history of a disease.
- Under GINA, the definition of genetic information includes genetic counseling, family medical history, and genetic test results. Thus, a health insurer cannot discriminate against an individual based on undergoing genetic counseling, their family’s manifested diseases (such as cancer), or genetic test results
- Medical records are rife with genetic information. When receiving a request for medical records, providers should make sure to remove information on genetic test results, family medical history, use of genetic services, and participation in genetic research to ensure that their patients have the fullest protections of the law
- GINA does not apply to life, longterm care, and disability insurance. However, state laws may provide some protection. Providers should know where to direct patients for additional information.
- Ader T, Susswein LR, Callanan NP, et al. Attitudes and practice of genetic counselors regarding anonymous testing for BRCA1/2. J Genet Couns. 2009;18:606-617.
- Nedelcu R, Blazer K, Schwerin B, et al. Genetic discrimination: the clinician perspective. Clin Genet. 2004;66:311-317.
- GINA§101. Genetic Information Nondiscrimination Act, H. R. 493, 110th Congress of United States of America. 2008.
- State laws on genetic privacy. www.councilforresponsiblegenetics.org/geneticprivacy/map_statelaw.html. Accessed February 15, 2012.
- GINA overview. www.ginahelp.org/. Accessed February 15, 2012.
- American Society of Clinical Oncology. Statement of the American Society of Clinical Oncology: genetic testing for cancer susceptibility. J Clin Oncol. 1996;14:1730-1736.
- American College of Obstetricians and Gynecologists. Hereditary breast and ovarian syndrome. ACOG Practice Bulletin. Number 103, April 2009.