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Genetic Discrimination: What Oncology Nurses Need to Know About GINA and Health Insurance

TON - MARCH 2012 VOL 5, NO 2 published on April 10, 2012 in Genetic Counseling
Anya Prince, Esq
Cristi Radford, MS, CGC

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

GINA was signed into law on May 21, 2008.3 It is a federal law and as such provides a basic level of protection for all Americans. It prohibits health insurers and employers from discriminating against individuals on the basis of genetic information. It also prohibits these actors from collecting genetic information except in limited circumstances discussed below. Some states have provisions for genetic discrimination that are more protective than GINA.In such situations, entities must comply with GINA and the more protective state laws. The definition of genetic information in GINA is not limited to genetic test results. It is defined broadly and includes family medical history, genetic test results, participation in genetic research, and use of genetic services.5 GINA does not apply to Tricare, the Veterans Health Administration, the Indian Health Service, or the Federal Employees Health Benefits Program. However, many of these programs have protections similar to GINA. Although GINA does provide protection for the majority of individuals against genetic discrimination for health insurance and employment, it is important to note that GINA does not apply to life, long-term care, or disability insurance.
The only circumstance under which a health  insurance company can request genetic information is when trying to determine if a procedure is medically necessary. For example, if a patient is seeking to undergo prophylactic surgery, the insurance company can gather information about genetic test results and family history to determine if that is a necessary procedure. The insurance company does not have to cover the procedure, but it cannot use the genetic information to raise rates, cancel a policy, or otherwise discriminate. Under GINA, if it is reasonable for an employer or insurance company to expect that genetic information could be gathered in a request for medical records, the collection request must explicitly state that genetic information should not be provided. If healthcare professionals or patients do not comply with the notice by handing over genetic information, then insurance companies will not have violated the law by receiving genetic information.
Applying Knowledge to Clinical Practice
Scenario 1: Patient is considering genetic services
Samantha is a 38-year-old female recently diagnosed with breast cancer. Additionally, she has a family history of numerous cancers. She was previously referred for genetic counseling, and you notice she did not keep her appointment. When you inquire about the reason, she responds, “If I have a positive genetic test, I will lose my health insurance.” How can you encourage Samantha to undergo genetic counseling?
Genetic counseling is a multifaceted process. One component of the process is empowering patients to make an informed decision regarding genetic testing. Therefore, undergoing genetic counseling does not translate into automatic genetic testing. The practitioner providing the genetic counseling will discuss the benefits, limitations, and risks of genetic testing. Additionally, he or she will discuss current legislation regarding genetic discrimination.6,7 Under GINA, the definition of genetic information includes use of genetic services, such as genetic counseling. Thus, a health insurer or employer cannot discriminate against an individual based on undergoing genetic counseling. Therefore, you can encourage Samantha to meet with a genetics provider to obtain additional information. It is the responsibility of the individual providing the genetic counseling to discuss state and federal laws as they apply to genetic testing in more detail. 
As Samantha has expressed that her concern is loss of health insurance with a positive test result, educating her about the benefits of genetic counseling may not be enough. To encourage her to attend the appointment, you can reassure her that under GINA a health insurer cannot use the results of a genetic test to discriminate. Additionally, she may not be aware that her test results may have implications in her current treatment and future medical management, as well as medical management for her family members. Her actual risk of genetic discrimination is most likely much less than the chance she would have an additional cancer if she tested positive. In the unlikely situation that Samantha has an insurance plan that does not fall under GINA’s protections, she would need to look at state laws to see if her plan is covered under them or look to the rules of the plan itself. For example, the Federal Employees Health Benefits Program has rules against genetic discrimination that are similar to many aspects of GINA. 
Scenario 2: Patient has been identified as having a hereditary cancer syndrome
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. 
If healthcare professionals receive a medical records request, they should be sure to redact the genetic information of a patient to help ensure the full protection of the law. This includes redaction not just of genetic test results but also of family medical history, use of genetic services, and participation in genetic research. However, manifested diseases are not included in the definition of genetic information. 
In John’s case, the presence of the adenomatous polyps would not be redacted because those are manifest in the patient. However, any information about family members who have had cancer in the past or John’s APCgene mutation should not be passed to the insurance company. As the person receiving the request for medical records, you should make sure to remove information about John’s APC test results, family history, genetic counseling services, and/or participation in genetic research. If you send this information and the insurance company stated this information should not be included, then John may not be fully protected under GINA.

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. 
GINA does not apply to life, long-term care, and disability insurance. Therefore, Tabatha’s concerns about her children’s ability to get life insurance may be well-founded; however, this depends on where her children are trying to get insurance. Life, long-term care, and disability insurances are regulated at the state level, and the extent of protection varies greatly among the states. As Tabatha’s nurse, you can point her to resources that can help her determine how her children are protected across state lines. It is important to keep in mind that not only the protections but also the definition of genetic information may vary among state laws. For example, Connecticut has no state-level protections for these insurances, while Vermont prohibits insurers from basing a policy of insurance on genetic test results. Additionally, some states, such as California, define genetic information broadly to include family history, while others in clude only genetic test results in the definition. Oncology nurses should inform  patients such as Tabatha that these laws may vary but be clear that this is an area where there may be gaps in the law. 
Despite possible gaps, overall, you can encourage Tabatha to have her children undergo genetic counseling. The definition of genetic information
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.
Take-Home Messages
  • 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.


  1. 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.
  2. Nedelcu R, Blazer K, Schwerin B, et al. Genetic discrimination: the clinician perspective. Clin Genet. 2004;66:311-317.
  3. GINA§101. Genetic Information Nondiscrimination Act, H. R. 493, 110th Congress of United States of America. 2008. 
  4. State laws on genetic privacy. Accessed February 15, 2012.
  5. GINA overview. Accessed February 15, 2012.
  6. 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.
  7. American College of Obstetricians and Gynecologists. Hereditary breast and ovarian syndrome. ACOG Practice Bulletin. Number 103, April 2009.
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Last modified: September 9, 2019