New Law Prevents Genetic Discrimination

With the culmination of more than a decade of efforts to protect Americans from genetic discrimination by employers and health insurance companies, President Bush signed the Genetic Information Nondiscrimination Act of 2008, or GINA, into law on May 21.

The new law prohibits insurance companies from denying coverage or raising premiums based on a person’s genetic information, and prohibits employers from using it in hiring, firing, assignment, and promotion decisions. It also prohibits employers and insurers from requiring or requesting a person to undergo genetic testing. The health insurance regulations will take effect by May 2009 and the employment regulations will take effect in November 2009.

Under GINA, protected information includes genetic test results as well as family history of a particular disease. However, the law does not prohibit genetic information from being used in determining coverage for life insurance, disability insurance, or long-term care insurance.

A survey of almost 1,200 people by The Genetics and Public Policy Center at Johns Hopkins University found that 92 percent of respondents were concerned that genetic test results could be “used in ways that are harmful to the person.”

By protecting individuals from genetic discrimination, GINA helps eliminate the fear associated with participating in clinical trials involving genetic information. GINA is also expected to have positive effects on clinical research and health care delivery, The New England Journal of Medicine reported in June.

The Genetics and Public Policy Center launched Project GINA on September 1 as a one-stop shop for information on GINA’s protections and requirements and to keep people updated on how federal and state regulators are implementing the law. For more information, visit “Project GINA” at www.DNApolicy.org.