HealthLawProf Blog

Editor: Katharine Van Tassel
Concordia University School of Law

Tuesday, July 15, 2008

Guide to Genetic Testing

The Wall Street Journal provides a brief guide to understanding the costs, processes, and legal protections of genetic testing and what insurers typically cover in such testing.  Jilian Mincer writes,

Genetic_testingIn recent years, about 1,000 genetic tests have become available. Many are covered by health insurance plans, as are additional screenings or interventions that may be advisable based on the results.

A new federal law and many state laws prohibit employers and health insurers from discriminating on the basis of genetic tests.

Consumers should recognize, however, that some genetic tests involve more out-of-pocket costs -- and also raise thorny questions about their benefits and desirability.

Insurers typically cover a genetic test that's definitive and could make a difference in someone's treatment, says Helen Darling, president of the nonprofit National Business Group on Health. In such cases, "it is advantageous for the [insurance] plan for these risks to be identified," she says.

For example, WellPoint -- like most insurance companies -- covers the test for BRCA1 and BRCA2 because women with the gene have a greater risk of developing breast and/or ovarian cancer, says Alan B. Rosenberg, the company's vice president of medical policy.

Women who test positive often get more frequent tests, clinical exams and mammograms. Some even chose prophylactic surgery.

In contrast, WellPoint doesn't cover tests for Alzheimer's disease, because there currently is no prevention or potential treatment.

Individuals may or may not see value in knowing they are likely to get a serious disease for which no prevention or treatment is currently available.

More Tests Than Ever

While doctors have long done prenatal screenings for chromosomal abnormalities such as Down syndrome, there are now tests available for numerous genetic disorders -- and which may indicate increased risk of disease long before symptoms appear. Testing may be used before conception or in vitro fertilization, to confirm a diagnosis, or to screen for illnesses that run in one's family. Genetic tests also can be used to gauge a patient's probable response to a medication.

The tests typically use a patient's blood, saliva or tissue. Most cost $1,000 to $2,000, says Steven Keiles, president-elect of the National Society of Genetic Counselors. But some cost much more.

Legal Protections

The Genetic Information Nondiscrimination Act, or GINA, signed into law by President George W. Bush in May, prohibits health insurers from raising premiums or denying coverage based on genetic information. It applies to people who have genes that carry the risk of disease, but not to those who already have a disease.

The law also prohibits employers from using genetic information when making decisions about hiring, firing, promotions or job assignments.

About 47 states have their own laws that prohibit discrimination in health insurance, and about 35 states have laws against genetic discrimination in employment.

Consumers can look at their insurance carriers' Web sites for more details about coverage for genetic testing and associated counseling.

Ms. Darling recommends also getting information from sources such as the National Institutes of Health or an association affiliated with a condition, such as the American Heart Association or the American Cancer Society. Useful Web sites to visit include, and

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