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Genetic information can refer to family history of a disease or a genetic test result. Genetic discrimination occurs when a person is treated differently because he or she has an inherited disorder or is at risk to develop an inherited disorder. Most concerns about genetic discrimination relate to discrimination by health insurance companies and by employers.

Patient Protection and Affordable Care Act (PPACA)

Signed into law in March 2010, PPACA contains several provisions that impact individuals and families affected by cancer:

  • Access to health insurance for all Americans—including those who are currently uninsured
  • Elimination of pre-existing conditions as barrier to coverage
  • Elimination of annual and lifetime caps on insurance coverage
  • Capping out-of-pocket healthcare expenditures
  • Coverage of young adults up to the age of 26 on their parent’s plan
  • Coverage for screening and preventative services including breast, colorectal and cervical cancer screenings—without a co-payment

• Coverage for those enrolled in clinical trials

Below are further details on relevant provisions:

Elimination of pre-existing conditions

PPACA eliminates the use of pre-existing conditions to deny or impose waiting periods on insurance coverage. In the interim, temporary high-risk pools (PCIPs), have been established at the state level or through federal-state partnerships to assist patients with pre-existing exclusions that limit coverage. According to, 23 states and the District of Columbia elected to have their PCIP program administered by the federal government; 27 states have chosen to run their own programs.

Elimination of annual and lifetime limits

PPACA eliminates annual and lifetime limits on insurance coverage. PPACA bans insurance plans beginning on or after September 23, 2010 from cutting off policyholders when a lifetime benefit was reached. The law phases out annual limits over a period of three years and will completely ban annual caps on January 1, 2014.

Capping out-of-pocket healthcare expenditures

PPACA places caps on how much money insured people will have to spend out of their own pockets for healthcare services that are covered in the new law’s essential health benefits package. These caps on out-of-pocket spending will go into effect in 2014. The out-of-pocket spending caps will follow a sliding scale: Those with lower and middle incomes will pay less out of pocket than those with higher incomes. The new caps guarantee that consumers will not have to pay more than a set amount annually in out-of-pocket expenses for covered services. 

Coverage for those enrolled in clinical trials

The law requires health plans to pay the routine care costs of patients who participate in clinical trials for the prevention, detection and treatment of cancer and other life-threatening conditions.

For more information on the Patient Protection and Affordable Care Act, visit

Health insurance appeals

Cancer Legal Resource Center logoThis information was prepared by the Cancer Legal Resource Center (CLRC). The CLRC is a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles. The CLRC provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.

Navigating Insurance Coverage for Preventative Care

Overview: Coverage for preventative care

There are many preventative options for individuals with a genetic predisposition for breast and/or ovarian cancer. However, insurance coverage for these preventative services can vary greatly. There are some preventative services that insurance companies are required to cover. For other preventative services, insurance coverage can differ depending on the policy. If an insurance company refuses to cover the cost of a particular preventative service, an individual may appeal the insurance company’s decision. There are certain legal requirements for the insurance appeals process.

What preventative services must an insurance company cover?

Federal law, and some state law, requires health insurance companies to provide certain preventative care. Under the Patient Protection and Affordable Care Act, otherwise known as health care reform, health insurance policies issued on or after March 23, 2010 must cover certain preventative services. These services must be covered free of cost to the patient. This means that if an individual uses an in-network provider to receive the services, the services must be exempt from deductibles and co-payments. Some examples of the preventative services that insurance companies must cover are BRCA counseling about genetic testing for women at high risk, mammography screenings every 1-2 years for women over 40, and chemoprevention counseling for women at higher risk. A complete list of preventative services can be found at Preventive Services Covered under the Affordable Care Act.

Additionally, many states have statutes that require insurance companies to cover specific cancer screening tests. For example, many states require coverage for mammography for breast cancer, prostate-specific antigen (PSA) tests and digital rectal exams for prostate cancer, colonoscopies, flexible sigmoidoscopy and fecal occult blood tests (FOBT) for colorectal cancer, and pap smears for cervical cancer. For state specific requirements contact your state’s insurance agency or the Cancer Legal Resource Center (CLRC).

What option do I have if my insurance doesn’t cover a treatment?

If an insurance company doesn’t cover a treatment, an individual does have the right to appeal the decision. In the realm of preventative care, the insurance company may deny a claim because they argue that is not medically necessary for the insured patient. In that case, the individual can appeal the decision and try to prove that the preventative or prophylactic measure is medically necessary.

The first step that must be taken when appealing a health insurance decision is to follow the insurance company’s internal appeals process. Health insurance companies are required to have an effective internal appeals process for any disagreements with their policy-holders. An individual can gain information about the internal appeals process on any claim denial form or in the insurance policy paperwork.

The Employee Retirement Income Security Act of 1974 (ERISA), the Patient Protection & Affordable Care Act (otherwise known as “Health care reform”), and various state laws govern insurance appeals. ERISA requires most health insurance companies to meet certain minimum requirements for internal appeals. For example, insurance companies under ERISA must provide at least 60 days after notice of a denial for an individual to appeal, allow individuals to add additional evidence during an appeal, provide an expedited review process for urgent care appeals, and have no more than two levels of appeals available before internal appeals are exhausted. Health care reform requires new health plans beginning on or after September 23, 2010 to have an effective review process that ensures a full and fair review of a denial. The requirements of health care reform are currently being established in the regulations. Contact the CLRC for current information regarding internal appeals.

An external appeals system may be an option if an individual’s claim has been denied, even after going through an internal appeals process. In many states, individuals are required to exhaust their internal appeal rights before turning to the external appeals process.

After exhausting the internal appeals process, individuals can appeal through their state’s external medical review program. These programs are also called independent medical review because it is a review of the health insurance company’s decision by an outside, independent organization. The rules for external medical review vary from state to state. Most states allow external review in those instances when a claim is denied because it was found to be (1) not medically necessary or (2) experimental or investigational. Some employer-sponsored health insurance plans are self-funded. The external appeals processes for self-funded plans are rapidly changing due to the implementation of health care reform. Contact the CLRC for questions regarding insurance appeals and self-funded plans.

Because the state external review process is often available in cases where treatments were deemed not medically necessary, this process is an option for those seeking preventative or prophylactic treatment. If the individual can show that the preventative treatment is medically necessary, then there is a greater chance of winning the appeal. In this process, doctors and other health care professionals can be a huge help in presenting evidence that the treatment is medically necessary. If an external review finds in favor of the individual, that decision is generally binding on the insurance company, although the specific rules vary state by state.

Where can I go to get more information about insurance appeals?

For further information about insurance appeals, contact your state’s insurance agency and your health insurance company. Additionally, has information about health insurance appeals and health care reform. Finally, you can call the Cancer Legal Resource Center (CLRC) at (866) THE-CLRC (866-843-2572) for more information about federal and state-specific insurance laws.

DISCLAIMER: This information is designed to provide general information on the topics presented. It is provided with the understanding that the author is not engaged in rendering any legal or professional services by its publication or distribution. Although these materials were reviewed by a professional, they should not be used as a substitute for professional services. The CLRC has no relationship or affiliation with the referral agencies, organizations or attorneys to whom we refer individuals. Resources and referrals are provided solely for information and convenience. Therefore, the CLRC disclaims any and all liability for any action taken by any entity appearing on the CLRC’s resource and referral lists.

Genetic Information Non-Discrimination Act (GINA)

The Genetic Information Nondiscrimination Act (GINA) is federal legislation that prohibits health insurance and employment discrimination on the basis of genetic information or a genetic test result. 

With regard to health insurance discrimination, the Act:

  • prohibits enrollment restriction and premium adjustment on the basis of genetic information;
  • prevents health plans and insurers from requesting or requiring that an individual take a genetic test;
  • prevents health plans and insurers from pursuing or being provided information on predictive genetic information or genetic services prior to enrollment – the time when this information is most likely to be used in making enrollment decisions;
  • covers all health insurance programs, including those regulated by the federal government under ERISA, state-regulated plans, Medigap, and the individual market.

With regard to employment discrimination, the Act will:

  • prohibit discrimination in hiring, compensation, and other personnel processes;
  • prohibit the collection of genetic information, and allow genetic testing only to monitor the adverse effects of hazardous workplace exposures;
  • require genetic information possessed by employers to be confidentially maintained and disclosed only to the employee or under other tightly controlled circumstances;
  • cover employers, employment agencies, labor organizations, and training programs.

Risk of genetic discrimination

Although many people cite fear of genetic discrimination as the reason they do not pursue genetic testing, documented cases of genetic discrimination are rare. However, a study published in the American Journal of Medical Genetics, the authors found that people with inherited disorders or inherited risk were very concerned about genetic discrimination. There is a perception on the part of the public and some health care providers that there is a significant risk of genetic discrimination, particularly in health insurance. This perception is keeping many people from taking advantage of genetic tests that could make a significant difference in their health care decisions and outcomes. This fear also prevents many people from becoming involved in the medical research that could provide better information and choices for those affected by hereditary diseases in the future. In one study done before GINA laws were enacted, researchers found that 39% of those surveyed listed fear of genetic discrimination as the most important reason for not pursuing genetic testing.

According to Dr. Francis Collins, director of the National Human Genome Research Institute, all diseases are affected by hereditary factors. “The study of the genome will reveal over the next decade the hereditary factors that contribute to virtually all common diseases, including diabetes, cancer, heart disease, mental illness, hypertension, and many others.”

Therefore, anyone could be at risk for genetic discrimination. Family medical history could be considered “genetic information” and could be the basis for genetic discrimination even for someone who has never had genetic testing.

It is important for anyone considering genetic testing to weigh the potential benefit of a genetic test against the fear of discrimination, and it is important to base the decision whether or not to have genetic testing on credible and up-to-date information received from a genetics specialist.

Genetic privacy

HIPAA includes a privacy rule that requires health care professionals to notify you about your privacy rights and how your information can be used. The privacy rule provides for the release of your medical information (including genetic test results) for certain specified purposes, including the release to insurance companies for payment. However, in most instances, the privacy rule requires your permission before your health information can be shared with individuals or organizations. It is important to read and understand your health care providers’ policies and any medical release forms before signing them.

Some states have genetic privacy laws which offer more protection. The laws vary on what information is protected, whether a separate release must be signed before information can be shared with certain third parties and what penalties (if any) apply for violations. Because laws are constantly changing, you may want to research the most current laws in your state


The Health Insurance Portability and Accountability Act (HIPAA) protects people with group health insurance against being denied insurance, having their insurance canceled, or having their rates individually increased due to any pre-existing condition. For HIPAA protection to apply, an individual must have had health insurance for at least 12 months without a lapse of 63 consecutive days or longer.

Although HIPAA prohibits discrimination against an individual with group insurance coverage based on any medical condition, it does not prohibit the insurance company from denying coverage to or increasing the rates of the entire group based on the medical records of one member of the group. HIPAA does not prevent insurance companies from requiring applicants to reveal whether they have had genetic testing in order to enroll in their group plans, even though the insurance companies are not allowed to use this information. Further, HIPAA laws do not provide protection to people covered by individual health insurance plans.

State laws

Every state defines genetic information differently and each state offers different protection forf genetic information. Most states have some laws to prevent insurance companies and employers from discriminating based on a hereditary risk for disease. However, not every state offers the same protections, and some states have not yet passed laws prohibiting genetic discrimination. You may want to research and understand how your state defines genetic information. The National Conference of State Legislatures has a state-by-state list of laws pertaining to genetic tests.

Because laws are constantly changing, you may want to research the most current laws by speaking with a genetics professional in your area.

Federal employees

Federal employees have additional protection. An executive order enacted in 2000 prohibits discrimination in federal employment based on genetic information. There are currently no federal laws providing adequate protection against life or disability insurance discrimination based on hereditary disease risk.

If you suspect discrimination

Anyone who feels that they have been subjected to discrimination by an insurance company based on genetic information can contact their state insurance commissioner’s office.

Victims of genetic discrimination in the workplace can contact the Equal Employment Opportunity Commission (EEOC) which is the organization responsible for enforcing the Americans with Disabilities Act. The EEOC may be able to help some, but not all, applicants and employees who believe they have been subjected to genetic discrimination. Individuals who believe that they have faced discrimination on this basis should contact their local EEOC office. Local EEOC offices can be identified by consulting the Commission’s website, the federal government listings in the telephone directory, or by calling a toll-free information number at (800) 669-4000 or (800) 669-6820 (TDD). Time frames control the filing of charges of employment discrimination. Private sector employees may have as little as 180 days from the date of the alleged discriminatory act to initiate a claim. Federal government employees must contact an EEO counselor at their agency within 45 days of the act of alleged discrimination.
(Source: Communication with the EEOC)