Genetic Testing Cannot Be Used to Exclude Individuals

Newly passed legislation signed by President Bush late last month will protect Americans from discrimination by insurers and employers due to their genetic makeup or family history.

APA has advocated for the measure for many years while also being vocal about ensuring patient confidentiality.

Specifically, the Genetic Information Nondiscrimination Act (GINA) of 2008 bars health insurers from canceling, denying, refusing to renew, or changing the terms or premiums of coverage based solely on an individual's genetic predisposition toward a specific disease. It also forbids employers from using an individual's genetic information when making hiring, firing, promotion, and other employment-related decisions.

The health insurance protections have up until 12 months of the law's signing to go into effect, and the employment protections have 18 months. The law directs the departments of Health and Human Services, Labor, and Treasury to enforce its provisions.

The U.S. Congressional Budget Office reported that one result of the measure is that more people will qualify for individual health insurance plans, since some insurers that sell such plans are already using genetic test results to deny coverage.

“Since no one is born with perfect genes, each one of us is a potential victim of genetic discrimination,” said Rep. Louise Slaughter (D-N.Y.), the bill's sponsor, in a written statement. “By prohibiting the improper use of genetic information, this bill encourages Americans to undergo the testing necessary for early treatment and prevention of genetic-based diseases.”

The law addresses a number of widely held concerns.

Some supporters of the legislation said it was a necessary follow-up to the federal government's $3.7 billion Human Genome Project, completed in 2003, because it would ensure that genetic information derived as a result of that research would not be used against individuals.

“The concern is that once we become more sophisticated with genetic profiles, we will be able to eliminate the potentially sick from health insurance” plans, said Steven Sharfstein, M.D., a former APA president and president and CEO of Sheppard Pratt Health System, at APA's 2008 annual meeting in May. “But that's not how it should work.”

Genetic testing offers tremendous promise in identifying existing and potential health concerns, according to APA Medical Director James H. Scully Jr., M.D. However, patients may be reluctant to participate in clinical studies that require such testing, and others may forego screening and potentially lifesaving treatment due to concerns about potential misuse of the data.

Indeed, a 1997 Department of Labor report documented that 63 percent of individuals surveyed said they would refuse to take genetic tests if insurers or employers could access their private results.

Thus, GINA also establishes a Genetic Nondiscrimination Study Commission to review the developing science of genetics and advise Congress on the need for further action.

This is the same measure that Sen. Tom Coburn (R-Okla.) had placed a hold on in 2007 over his concerns and those of some business leaders that it could have unintended consequences for claims processing, medical records, and information sharing with law enforcement (Psychiatric News, May 18, 2007). Supporters eventually negotiated a compromise version that addressed these issues satisfactorily for the senator and others.

The Genetic Information Nondiscrimination Act can be accessed at<http://thomas.loc.gov> by searching on the bill number, HR 493. ▪