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The cost of a genetic consultation and testing is usually covered by hemplexity of the referral. You should check with your health plan to learn if it will cover the costs of a genetic evaluation. You do not need a referral from a physician to schedule a consultation at the GenRISK Adult 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 Cedars-Sinai Medical Center. 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 GenRISK Adult 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 for more information about these issues.
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 (see the Health Insurance Portability and Accountability Act below) and California law (see summary below).
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.
- Patients' fear of genetic discrimination by health insurers: the impact of legal protections. By M.A. Hall and S.S. Rich. Genetics in Medicine, July 2000 volume 2 number 4, pages 214-221
- Laws restricting health insurers' use of genetic information: impact on genetic discrimination. By M.A. Hall MA and S.S. Rich. American Journal of Human Genetics, January 2000, volume 66, number 1, pages 293-307.
Legal Protections Against Genetic Discrimination
There are federal laws and California 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), effective July 1, 1997.
(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. Click on
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.
California State Law
Below is a summary of current California state protections against genetic discrimination. It is taken from a 1997 article by Dr. George Cunningham printed in the Pacific Southwest Regional Genetics Network newsletter. Copies of the laws can be viewed at a public library.
"The Health and Safety Code Section 1374.7 prohibits prepaid heath care plans from denying, canceling, refusing to renew or charging more for coverage, or for providing different terms or benefits to a person based on genetic characteristics. 'Genetic characteristics' are defined as a family history of genetic disorder or gene alterations causing or increasing the risk of a disease or disorder. The definition does not include those already affected by a genetic disorder. Insurance Code Section 742.405 establishes the same prohibition for self-funded or partially self-funded employer welfare arrangements. Likewise, Insurance Code Section 10123.3 applies these same restrictions to self-insured employee welfare benefit plans. Insurance Code Section 11512.95 establishes the same prohibition for non-profit hospital service plans. Insurance Codes 10140 and 10146 to 10149.1 prohibit life and disability income insurance companies from discrimination based on genetic characteristics, prohibit companies from requiring genetic tests, and proscribe penalties for the unauthorized release of genetic test results. Civil Code Section 56.17 and Insurance Code 10123.35 provide broad protection against unauthorized disclosure of genetic test results by health care service plans. California law (H&S Code 1367.7, Insurance Code 10123.9 and 11512.18) requires that coverage for prenatal diagnosis of genetic disorders of the fetus be offered and prohibits companies from requiring genetic tests or information for any non-therapeutic reason or from disclosing the results of tests without authorization."
For more information about the laws enacted in California and HIPAA (federal legislation), please contact the Cancer Legal Resource Center, a joint program of the Western Law Center for Disability Rights and Loyola Law School, at (213) 736-1455.