Through direct-to-consumer genetic testing, it is now possible to get information about your genetic predisposition to certain illnesses without consulting a doctor. One test, made by 23andMe, was authorized in March 2018 by the U.S. Food and Drug Administration to tell users whether they have any of three mutations in the BRCA1 and BRCA2 genes that are linked to increased risk of certain cancers.
An at-home genetic test may not be as complete as one you would get in a medical office, so results from these at-home tests may not be conclusive. Experts have spoken about the medical and psychological implications of direct-to-consumer testing, raising concerns about false positives as well as false reassurances. If your family members have had certain types of cancers, consider speaking with a medical professional or genetic counselor about whether genetic testing is a good idea for you, and speak to a medical professional before taking any action based on the results.
Among the implications of genetic testing are potential legal issues. Here are some legal questions to consider before submitting your DNA to a genetic testing company.
Will my information be kept private?
Under the Health Insurance Portability and Accountability Act (HIPAA), a federal law passed in 1996, health care providers and health plans must keep your personal health information private. You have to give permission for any third party to access your medical records. If you visit a doctor for genetic testing, your visit to the doctor will become part of your medical records. If you later agree to share your medical records with a third party, that third party will have access to information from your doctor visit.
Regardless of whether you receive genetic testing through your doctor’s office or using an at-home kit, you may have to disclose any information you become aware of, such as family history or genetic testing results, if you are asked about it in a future disability, long-term care or life insurance application.
Can my employer take negative action against me if they find out I have a gene linked to increased cancer risk?
There are some legal protections in place so that people are not discouraged from taking genetic tests out of fear of discrimination. The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects against genetic discrimination by employers and health insurers.
GINA protects you from employment discrimination if you work for a covered employer (including employers with 15 or more employees, employment agencies, labor organizations, apprenticeship programs, and federal, state and local governments). Employers cannot consider your genetic information when making employment decisions on hiring, firing, advancement or compensation.
Under GINA, protected genetic information refers to the following information about you or a family member: genetic tests, requests or receipt of genetic services by you or a family member, genetic information about a fetus carried by you or a family member, and family medical history. Once you have been diagnosed with cancer or another illness, even if it is hereditary, it is considered a manifested disease and not genetic information protected under GINA. For example, a positive test result for BRCA1 or BRCA2 genetic mutation would be considered genetic information protected under GINA, while breast cancer would be considered a manifested disease that is not protected under GINA.
While GINA protections end once you have a manifested disease, you may still be entitled to protections against discrimination in employment. If you have cancer, you may be entitled to protection against discrimination based on a disability under the Americans with Disabilities Act (ADA). However, not everyone with cancer is protected by the ADA. (Contact the Cancer Legal Resource Center for more information about protection against discrimination in employment for people with cancer).
Will testing positive for a mutation make it harder for me to get health insurance?
Under GINA, it is illegal for health insurers to discriminate against you based on genetic test results. This means health insurance companies cannot make eligibility decisions or charge you more for health insurance based on your genetic predisposition to illness and cannot ask you to undergo genetic testing to set rates. (However, GINA protections do not apply to people who get their insurance through certain programs.)
GINA protects you from being denied health insurance based on genetic test results, but if you have a manifested disease, such as cancer, the protections of GINA end and other protections begin. The Patient Protection and Affordable Care Act, passed in 2010 and implemented in 2014, makes it illegal for insurance companies to charge you a higher rate or deny you coverage based on a pre-existing condition (a health condition that existed before you applied for new coverage). If you have a grandfathered individual health insurance policy, there are certain protections that do not apply, such as pre-existing condition protections. If you have a grandfathered plan, you can switch to an individual plan on the health insurance marketplace that offers protection against discrimination based on pre-existing conditions.
Can other types of insurance companies deny me coverage if I test positive for a genetic mutation linked to increased risk of cancer?
GINA does not protect against discrimination in the purchase of life, disability or long-term care insurance, so your genetic information can be used to deny coverage or set rates. If you misrepresent facts or commit fraud on an application for life, disability or long-term care insurance, your policy could be cancelled, or you could be denied benefits. That means if you learn of a family history of cancer or learn of a genetic predisposition and you are asked about it on an application, you may have to disclose this information. However, some states provide additional protections against discrimination beyond what GINA offers. To find out if your state has laws that protect you from discrimination in the purchase of these types of insurance plans, contact your state department of insurance.
If your state has genetic antidiscrimination laws that offer protection beyond GINA, be sure you understand the limitations. Review the definition of genetic information that is protected by law. For example, state law may prevent insurance companies from asking you to take a genetic test and may consider test results protected genetic information, but state law might not prevent insurance companies from asking you about family history, which can reveal just as much as a genetic test. Federal and state laws work together to encourage people to undergo genetic testing for health reasons, but do not provide unlimited protection against discrimination.
If I believe I’m being illegally discriminated against based on my genetic testing results or family medical history, what can I do?
If you believe an employer has improperly used your genetic information against you, you should contact an employment law attorney right away.
For more information about GINA, including how to file a complaint if you believe you have been discriminated against, visit the U.S. Equal Employment Opportunity Commission (EEOC) page on genetic information discrimination.
If you believe a health insurer has discriminated against you based on your genetic information, contact your state department of insurance.
For more information about the ADA and disability discrimination in employment, visit the EEOC page on disability.
The Cancer Legal Resource Center (CLRC) is a program of the Disability Rights Legal Center. This article is meant for educational and informational use only. This article is not intended as legal or medical advice and should not substitute for an individual legal consultation with an experienced attorney in your state.
Please visit www.CancerLegalResources.org for more information and resources on cancer-related legal matters, including fact sheets, webinars and an online intake form where you can receive customized resources.
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