The promise of personalized medicine-genetic tests that allow more informed and individualized health care decisions-has been blocked in recent times as patients struggle with the fear that those same genetic test results could bring genetic discrimination in the form of cancelled health insurance coverage or even the catastrophe of job loss.
In 1997, Indiana enacted a state law protecting genetic screening or testing and prohibiting health insurers from considering any information obtained from such testing in a manner adverse to the applicant. Adverse actions include cancelling, refusing to issue or renew health coverage. But, the law fails to protect Hoosiers uniformly outside of Indiana because not all states have a similar law.
In May, Congress and the president leveled the playing field by enacting the Genetic Information Nondiscrimination Act of 2008, or GINA, which provides solid protections across the entire country for genetic privacy.
Heading off discrimination
GINA stops the improper use of genetic information in health insurance and employment. GINA prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. GINA also bars employers from using genetic information when making hiring, firing, compensation and promotion decisions.
Like many other non-discrimination laws, an employee who believes that he or she has suffered genetic discrimination may file a charge with the federal Equal Employment Opportunity Commission and can litigate in federal court to recover damages, including back pay, front pay and other equitable relief.
To manage that risk, employers should take advantage of GINA's 18-month delayed effective date to prepare. Employers should look for the EEOC to publish detailed regulations implementing GINA in the coming months.
Employers should review and update their policies and procedures to cover genetic discrimination and make certain that documents soliciting medical information from employees specifically exclude genetic information.
Benefits for many
For individuals, GINA should reduce the fear of genetic discrimination in health coverage and employment. Importantly, GINA does not protect against genetic discrimination for life insurance coverage. So, individuals should review the adequacy of their life insurance needs and purchase additional coverage before undertaking genetic tests.
Prior to GINA, physicians regularly warned patients of the economic risks associated with certain genetic tests. Many individuals would forgo testing entirely or order and pay for genetic test directly in an "underground" direct-to-consumer market to bypass disclosure to any third parties, including their own physician. With GINA's protections, that genetic information can be used legitimately for medical advances and personalized treatments without the threat of misuse.
GINA also may help life science scientists and companies working to discover and market diagnostic tests based on individual genetic information. Simply put, the era of personalized medicine, future scientific discoveries and preventative care can now be fully realized without fear of genetic discrimination.
Geneticists should now have less trouble recruiting research participants whose discrimination fears are reduced. And, participants who have previously paid for tests with cash to avoid submitting insurance claims may find wider health plan coverage of genetic tests. As a result, the pace of discovery for life saving treatments and cures should increase.
Life science companies may develop new genetic tests that could help physicians better identify drugs most likely to work in their patients. While this may sharply reduce the market for so-called blockbuster drugs, there will be a better chance that those who take the drug will have a positive outcome.
Even health insurers should benefit from GINA in cases when testing eliminates unneccessary treatments. Patients can be tested to find out which treatments will not work, avoiding the expense, uncertainty and risk of the current hit-or-miss series of drug treatments to find the right drug.
Bromund is co-chairman of the Health & Life Sciences Group of the Indianapolis law offfice of Taft, Stettinius & Hollister LLP. Views expressed here are the writer's.