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Americans Fear Genetic Discrimination, But Support Tests and Research, Johns Hopkins Survey Finds

NEW YORK (GenomeWeb News) — While an overwhelming majority of Americans support the use of genetic testing for medical conditions, an equal number fears employers or health care companies can misuse information from such tests in discriminatory ways, according to a Johns Hopkins University white paper.
According to the document, which reports results of a survey conducted by the school’s Genetics and Public Policy Center, more than 90 percent of Americans support researchers and doctors using genetic tests for research, for predicting reactions to medical treatments, and for identifying risk for treating disease.
But 93 percent of responders also said employers and health insurers should not be able to use personal genetic information to make decisions about workplace hiring or promotions, or about insurance limitations or pricing.
More than 75 percent of those surveyed supported a law that would protect Americans from employers and health insurers using genetic tests to make such decisions.
“Despite widespread, longstanding agreement among American citizens and politicians that protection from genetic discrimination should be clear and consistent, an individual’s genetic information is protected only by a largely untested patchwork of state and federal regulations,” according to the white paper.
The paper, which can be found here, said “many states have enacted protections” against genetic discrimination in health insurance, employment, or both, though these laws “vary widely in scope and many are untested in court.” State laws “fail to provide a uniform floor of protections in employment and health insurance on which Americans can rely,” according to the white paper.
When responders to the GPPC survey were asked how much they trust different people with their personal genetic test results, most said they would trust doctors, spouses, and genetics researchers. However, only 24 percent said they would trust health insurers with access to such tests, and only 16 percent would trust their employers with this information.
The center released the findings in a statement saying the survey was conducted in anticipation of an upcoming congressional vote on a bill, the Genetic Information Non-discrimination Act, designed to protect individuals from discrimination based on information from genetic tests.
The bill, known as GINA, is currently waiting for a vote in the US House of Representatives.

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