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Post-GINA, Consumers Still Worry about Genetic Privacy

By a GenomeWeb staff reporter

NEW YORK (GenomeWeb News) – Two years after the passage of the Genetic Information Non-discrimination Act, Americans have become more concerned about the privacy of their genetic information, a trend that could affect their willingness to have genetic tests, according to a new report by Cogent Research.

According to the Cogent Genomics, Attitudes and Trends study, which surveyed 1,000 people, 71 percent of respondents are concerned about how their genetic information will be stored and who will have access to it, an increase from 65 percent who felt that way in 2006.

Furthermore, 37 percent said that privacy concerns would keep them from having genetic tests, an increase from 30 percent four years ago.

The survey found that 71 percent of participants expressed some level of concern that health insurance companies could access their genetic information from tests, with 53 percent "extremely" concerned about that prospect. Respondents also expressed concerns that life insurance companies, the government, or employers could access their genetic information.

Consumers are not alone in their worries. CAHG, a healthcare communications firm that partnered with Cogent Research on the study, recently conducted a separate survey that found that 79 percent of physicians are concerned about the potential misuse of genetic information by health insurance companies and employers.

“Across the board, we see indications of Americans’ enthusiasm for genomics dampening,” Cogent Research Principal Christy White said in a statement. “This is a major concern, since the trend in previous years had been moving in the opposite direction."

The questions about privacy protections could be affected by the public's lack of awareness of the GINA law, as only 16 percent of those surveyed were aware of any laws protecting their genetic information. The CAHG survey found that 81 percent of physicians also were not familiar with the GINA law.

"At the end of the day, it is not that Americans don't have faith in GINA, they just haven't heard enough about it," White suggested.

Despite privacy concerns, 47 percent of respondents said they would be interested in using their genetic information in "understanding and optimizing their health," and 63 percent said that they would be more interested in doing so if they were assured that no one could legally access their DNA information without consent.

"The good news is that — the increase in concern around privacy has not dramatically decreased consumers’ and physicians’ overall level of interest in genomics and genomics-based medicine,” said CAHG CEO Scott Cotherman.

“Educating physicians on GINA presents a major opportunity for pharmaceutical, biotech, and molecular diagnostic companies to demonstrate leadership and provide value to one of their most critical customers as genomics-based medicine continues to move from promise to practice," Cotherman added.

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