Federal protections against genetic discrimination by insurers and employers are needed to fill in the gaps left by state legislation, according to a policy paper released by the American College of Physicians.
Only 25% of Americans trust their health insurer to not misuse their genetic information, and only 17% trust their employer, according to a 2007 survey conducted by the Johns Hopkins Genetics and Public Policy Center, Washington, cited in the paper.
This fear that genetic information will be used to deny insurance or employment might have detrimental effects, such as patients not sharing their complete medical history with their physicians, deciding to forgo genetic testing that could improve health decisions, and being reluctant to participate in research studies.
Under the provisions of HIPAA, genetic information is “protected health information” and insurers are prohibited from considering a genetic risk factor as a preexisting condition. But HIPAA does not prohibit insurers from charging a group higher premiums if one member has a known genetic risk factor, does not prohibit insurers from requiring genetic tests, and does not limit disclosure of genetic information.
State protections also are incomplete, according to the ACP, with 35 states having laws against genetic discrimination in employment and 47 states having laws against such discrimination in health insurance.
To remedy the gaps, the ACP advocates federal legislation that expressly prohibits insurers from using genetic information to deny or limit health coverage and from charging higher premiums based on genetic test results, prohibits employers from using genetic information in employment decisions, and prohibits insurers and employers from requiring genetic testing and from collecting and/or disclosing genetic information.
The organization also recommends that Congress include ERISA (Employee Retirement Income Security Act) health plans in such legislation; under ERISA, self-insured companies are exempt from state regulations.
“While they're not quite there, Congress does continue to move closer to passing federal legislation that protects the use of genetic information in employment and insurance coverage decisions,” Dr. David C. Dale, president of the ACP, said in a statement.
“This monograph is important for the ongoing discussion,” he said.
The current legislation before Congress, the Genetic Information Nondiscrimination Act (S. 358/H.R. 493), or GINA, includes many of the protections called for by the ACP, with the exception of the ERISA recommendation.
The bill passed in the House in April 2007, and a Senate vote is pending. President George W. Bush has said he would sign the bill.
If enacted, GINA would greatly expand protection against genetic discrimination by insurers and employers in the United States.
The Society for General Internal Medicine, the American Academy of Family Physicians, and the American Academy of Pediatrics are among the groups that support GINA.
The policy paper, “Establishing Federal Protections Against Genetic Discrimination,” is available on ACP's Web site at www.acponline.org/advocacy/where_we_stand/policy/gen_dis.pdf