Jan 11 2011
A report just released by Cogent Research, in partnership with CAHG, reveals that Americans are more concerned than ever about the privacy of their genetic information. Furthermore, this concern is increasingly inhibiting the likelihood that they will consider having a molecular diagnostic test. These and other findings are explored in more detail in the 5th edition of the Cogent Genomics, Attitudes & Trends study (CGAT™ 2010).
“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”
The CGAT™ study, based on a nationally representative survey of 1,000 Americans, reveals that the proportion of Americans who are concerned about how their genetic information would be stored and who would have access to that information, has climbed from 65% in 2006 to an all-time high of 71% in 2010. When asked whether their concerns might prevent them from having some type of genetic test in the future, the figure increased from 30% in 2006 to 37% today. "Across the board, we see indications of Americans' enthusiasm for genomics dampening," said Cogent Research Principal Christy White. "This is a major concern, since the trend in previous years had been moving in the opposite direction."
When asked about specific entities that they are concerned might access their personal genetic information without authorization, nearly three quarters of Americans (71%) cite concerns with health insurance companies. In fact, more than half of Americans (53%) say they are "extremely" concerned about that prospect. The CGAT™ study also reveals a high level of skepticism for a variety of other entities, including life insurance companies, the government, and employers.
Similarly, results of a landmark study on physicians' awareness, attitudes, and adoption of genomics-based medicine conducted by CAHG revealed that PCPs, cardiologists and oncologists share consumers' privacy concerns. Seventy-nine percent (79%) of physicians stated they were concerned about potential misuse of genetic information by authorities such as health and life insurance companies, as well as employers.
Despite the fact that Congress passed the Genetic Information Nondiscrimination Act (GINA), which was signed into law in May of 2008, CGAT™ found that fewer than one in five Americans (16%) are aware of any laws that protect the privacy of their genetic information. Three out of four Americans (77%) say they are unsure whether they are protected. An additional 8% assert that no such protections exist. Similarly, 81% of physicians in the CAHG study said they were not familiar with GINA. "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," added Ms. White.
On a positive note, close to half (47%) of all Americans say they would be interested in using their genetic information for the purpose of understanding and optimizing their health, and two thirds (63%) say they would be more interested in doing so if they were assured that, by law, no one could access their DNA information without their consent.
"The good news is that—as results from these two landmark studies demonstrate—the increase in concern around privacy has not dramatically decreased consumers' and physicians' overall level of interest in genomics and genomics-based medicine," said Scott Cotherman, CEO of CAHG. "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. To date, no one has stepped forward to seize a significant leadership position in this emerging field and CAHG, our partners, and Cogent Research are prepared to help make that a reality for forward-looking entities should they wish to pursue that course."
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