Federal Rule Limits Use Of Genetic Test Results
Publication: Psychiatric News
Federal regulators recently issued an interim final rule to implement a 2008 law barring insurers and employers from using Americans' genetic information to deny them insurance coverage, change their rates, or discriminate against them in the workplace. But more protections may be needed.
The departments of Health and Human Services (HHS), Treasury, and Labor issued the rule on October 1 to implement provisions of the Genetic Information and Nondiscrimination Act of 2008 (GINA, PL 110-233), which states that health insurers cannot cancel, deny, refuse to renew, or change the terms or premiums of coverage based solely on an individual's genetic risk of a specific disease. It also forbids employers from using a person's genetic information when making hiring, firing, promotion, and other employment-related decisions.
A 90-day public-comment period has been set for the interim final rule, closing on January 5, 2010.
“Echoing the late Sen. Ted Kennedy, our efforts to protect Americans undergoing genetic testing from having the results of that testing used against them by their insurance companies is one of the first major new civil rights of the new century,” said HHS Secretary Kathleen Sebelius in a written statement about the rule.
Under the rule, insurers cannot request, require, or buy genetic information, and they are generally prohibited from asking individuals or family members to undergo a genetic test. The rule, however, allows three potential exceptions to the overall ban on requests for someone to undergo genetic testing—when a “health care professional” requests one, for payment-determination questions, and for research purposes. The rule also defines genetic information, genetic services, genetic testing, and related terms and phrases.
Aim Is to Encourage Testing
The law and the interim final rule aim to encourage more Americans to undergo potentially lifesaving genetic testing without fear that the information will be used against them. Genetic testing can help in the early diagnosis and treatment of several disorders, help assess risk, and provide scientists with valuable data as they try to develop new medicines, treatments, and therapies, said Sebelius.
APA is reviewing the regulations and working on preparing a response. APA has long supported such a genetic-privacy measure as part of its advocacy for greater patient confidentiality protections. APA's concerns about privacy in this area stem, in part, from the increasing number of links researchers have identified between genetics and some mental illnesses. The misuse of such information could have a devastating impact on people with mental illness, supporters of the legislation had warned when Congress was considering it.
Loopholes Could Undermine Intent
Some privacy rights advocates have warned, however, that loopholes in the GINA law will allow future discrimination by employers and insurers.
Psychiatrist Deborah Peel, M.D., founder of Patient Privacy Rights, an advocacy group, said that GINA and the new rule do nothing to keep employers and insurers from accessing patients' genetic information.
“How on earth are you going to know if [insurers and employers] use the information against you if they already have access to it?” Peel told Psychiatric News. “Genetics are not destiny, but [insurers and employers] don't care.”
The Coalition for Patient Privacy, which Peel founded and includes the American Civil Liberties Union and the Bazelon Center for Mental Health Law, plans to push for legislation requiring that informed consent be obtained from individuals before their genetic information can be released.
Further information on GINA and the new rule is posted at <www.hhs.gov/ocr/privacy/hipaa/understanding/special/genetic/index.html>. 
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Published online: 6 November 2009
Published in print: November 6, 2009
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