The Genetic Information Nondiscrimination Act of 2008 (Pub. L. 110-233) was signed in May 2008 by President Bush. He called GINA “a piece of legislation which prohibits health insurers and employers from discriminating on the basis of genetic information. In other words, it protects our citizens from having genetic information misused.” GINA prohibits health insurance providers and employers from requiring genetic testing. Genetic data cannot be used to determine insurance premiums, eligibility for insurance, or employment.
GINA restricts the collection and use of genetic information in a number of ways. I have written previously about genetic data and the questions surrounding its collection and use, whether surreptitious or not. Earlier this year, the Pew-supported Genetics and Public Policy Center at Johns Hopkins University. released an issue brief on surreptitious DNA testing.
As the date nears for GINA to go into effect for employers, the New York Times reflects on genetic privacy:
Genetic tests help determine whether someone is at risk of developing an inherited disease or medical condition. These tests identify variations in genes, like whether a woman has a predisposition for ovarian cancer.
Such testing can help determine which course of treatment might work best for fighting a specific cancer or for helping a patient process a specific drug.
The new law (called GINA) was passed by Congress last year because many Americans feared that if they had a genetic test, their employers or health insurers would discriminate against them, perhaps by firing them or denying coverage. In a nationwide survey, 63 percent of respondents said they would not have genetic testing if employers could see the results. […]
One episode that created momentum for the legislation involved the Burlington Northern and Santa Fe Railway Company, which conducted genetic testing on several employees without their permission.
David Escher, a track maintenance worker in Nebraska who developed carpal tunnel syndrome on both wrists, said he was mystified why Burlington Northern ordered him to see a doctor who drew seven vials of his blood. Mr. Escher later learned that the railroad wanted to do genetic testing to determine whether he had a predisposition for carpal tunnel — in an effort to reduce its medical and workers’ compensation costs. […]
Burlington Northern reached a $2.2 million settlement in 2002 that was distributed to 36 workers who were either tested or asked to submit to blood tests.
Though GINA is a good first step, subsequent legislation could go even further in protecting genetic and other medical data from misuse or abuse. And the states could pass their own laws protecting the privacy of DNA, like Illinois. Shortly after the passage of GINA, the Illinois General Assembly passed Public Act 095-0927 (pdf), which updated the state’s Genetic Information Privacy Act and went into effect in January. The updated law:
Provides that an employer, employment agency, labor organization, and licensing agency shall not directly or indirectly do any of the following:
(1) solicit, request, require or purchase genetic information of a person or administer a genetic test to a person as a condition of employment, preemployment application, labor organization membership, or licensure;
(2) affect the terms, conditions, or privileges of employment, preemployment application, labor organization membership, or licensure, or terminate the employment, labor organization membership, or licensure of any person because of genetic information with respect to the employee or family member (or information about a request for or the receipt of genetic testing by such employee or family member of such employee);
(3) limit, segregate, or classify employees in any way that would deprive or tend to deprive any employee of employment opportunities or otherwise adversely affect the status of the employee as an employee because of genetic information with respect to the employee or family member (or information about a request for or the receipt of genetic testing by such employee or family member of such employee); or
(4) retaliate through discharge or in any other manner against any person alleging a violation of this Act.