Law puts genetic data off limits

Use is banned in hiring, insuring

If you have the breast cancer gene, is an employer justified in not promoting you to a key job out of fear that you'll get sick?

If you have diabetes controlled by medication, should an employer be able to find out and not hire you on the assumption that your health insurance costs will be high?

If sickle cell anemia runs in your family, is it fair to deny your participation in the group health insurance plan at work?

For about a decade the U.S. Congress has considered proposals to ban the use of such information in employment and some insurance decisions.

In 1998, 2001, 2003, 2005 and 2007, Congress considered such a law. This year, the Genetic Information Nondiscrimination Act of 2008 passed and is scheduled to go into effect next year.

The U.S. Chamber of Commerce and the Society for Human Resource Management said that the law was unnecessary and that the Americans with Disabilities Act and the Health Insurance Portability and Accountability Act provided the same protections.

Lawyers for employers said it opened up another cause of potential litigation from unhappy workers or job applicants. Advocates in the medical and civil rights communities disagreed.

The National Society of Genetic Counselors, the American Society of Human Genetics, the American Heart Association, the American Academy of Pediatrics, the National Partnership for Women & Families and dozens of organizations that exist to educate and support people with genetically influenced diseases delighted in the bill's passage.

Technology intrudes

It is, they said, a case of federal law keeping up with medical advances rather than waiting for individual court cases to make piecemeal policy when workers or insurance applicants allege they were discriminated against.

But, more than that, proponents say, the law may help save lives and provide early diagnosis and treatment. Nearly 1,200 genetic tests exist to help people know whether they have or may be likely to have certain diseases or disabilities.

As of November 2009, it will be illegal for employers, agencies or labor unions to buy or ask applicants or employees for genetic testing results.

If they get such information, they're supposed to keep it confidential and separate from other employment files and not use it to make hiring, promotion, firing, compensation or other employment decisions.

The law bans insurance companies from buying or requiring genetic information to make eligibility or premium decisions for group health plans that take effect on or after May 21, 2009.

Group health plans and insurers would not be able to require individuals to undergo genetic testing. The use of genetic information for pre-enrollment underwriting purposes will be prohibited.

It also prohibits group health plans from making changes in contribution or premium amounts for the group based on genetic information.

In the law, "genetic information" means any information obtained from analysis of DNA, RNA, chromosomes, proteins or metabolites that detect genotypes, mutations or chromosomal changes.

(Diane Stafford is a careers and workplace writer at The Kansas City Star. Her blog, workspacekc.typepad.com, includes daily posts about job-related concerns.)