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Insurance Coverage

The cost of a genetic consultation and testing is usually covered by health insurance plans, at least in part. Consultation fees range in price, depending upon the complexity of the referral. You should check with your health plan to learn if it will cover the costs of a genetic evaluation. Dr. Taylor is a staff physician at the University of Colorado and provides healthcare for various insurance plans. You can call your health plan (the telephone number is on the back of your insurance card) to learn if Dr. Taylor is a provider under your health plan.

You do not need a referral from a physician to schedule a consultation at the Adult Medical Genetics program, although some insurance plans require a physician referral if they are to cover the cost of the consultation.

The fees for genetic testing are separate from the cost of the genetic consultation. These are typically paid to a laboratory that is not part of CU. Most health plans reimburse for the cost of genetic tests, at least in part. They may require a letter of medical necessity that explains the need for the testing and how the test results will influence your care. The Adult Medical Genetics Program can provide this information to your health plan.

You do not have to share your test results with your insurance company, even if they pay for genetic testing. It is against state law for your health insurer to ask for your test result without your permission. If you have concerns about discrimination, read about the laws below. You can also discuss these issues with your genetic counselor or you can consult the Genetic Alliance or the National Human Genome Research Institute for more information about these issues.


Protections Against Genetic Discrimination

Some people worry that genetic risk for a disease will be considered a "pre-existing condition." They worry that their health plan will deny them health insurance or make them pay higher fees. In most cases, this kind of health insurance discrimination is against federal law.

Yet, many people are concerned about the potential for genetic discrimination. Fortunately, there is little proof of genetic discrimination by health insurers presently. The  Genetic Alliance is currently conducting a survey to identify and document cases of perceived genetic discrimination and privacy abuse. Below are references for two articles written by M.A. Hall and S.S. Rich that discuss the lack of evidence of genetic discrimination.

There are federal laws and Colorado State laws that forbid genetic discrimination. These laws focus mainly on health insurance discrimination. There are also laws against employment discrimination. In February 2000, President Clinton signed an executive order that bans genetic discrimination in the federal workplace. This order prohibits federal departments and agencies from using genetic information to make decisions regarding hiring, firing and promoting federal employees. The     Americans with Disabilities Act may also apply to people with genetic conditions. Below are some highlights of legislation. For more up-to-date information, you may need to consult other sources, the Genetic Alliance or the National Human Genome Research Institute   for more information about these issues. 

Highlights of the Health Insurance Portability and Accountability Act (HIPAA)

A version of this summary is distributed by Myriad Genetic Laboratories and should not be construed as legal advice. The law is very lengthy. This summary is only meant to provide general terms, not full statutory text. It should be used in conjunction with full text of the law.

  • The law will prevent discrimination against most people who have genetic testing for common adult diseases in the areas of health insurance coverage and group premiums. The law:
  • States clearly that genetic information should not be considered a preexisting condition.
  • Stops group and individual insurers from refusing to renew or continue coverage because of genetic information.
  • Keeps group plans from using genetic information to decide who can get coverage or to set premiums.
  • Prevents group plans from charging different premiums within a group based on genetic information.
  • Makes sure that a person (or family member) who changes to new group coverage will not be refused coverage or charged more than others in the group because of past or present medical problems.
  • Prevents an uninsured person applying for group medical coverage from being refused coverage or charged more than other group members because of past or present medical problems.
  • Assures that people leaving a group plan and seeking individual coverage can qualify regardless of past or present medical problems under some circumstances. (This depends on individual state laws).
  • Stops insurance companies from denying coverage to a small business because of any employee's past or present medical problems. It does not stop insurance companies from charging the entire group more than another group because of past or present medical problems.

Colorado Law

In 1994, the following Colorado state law was passed. This can be found specifically in Title 10, Art. 3, Part II: §10-3-1104.7

  • Prohibits the utilization of information derived from genetic testing from being used to deny access to health care insurance.
  • Provides for privacy protection of genetic information.
  • Genetic test: Any laboratory test of human DNA, RNA, or chromosomes that is used to identify the presence or absence of alterations in genetic material which are associated with disease or illness. Genetic testing includes only such tests as are direct measures of such alterations rather than indirect manifestations thereof.