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Majority of Americans Unaware of Personalized Medicine: Survey

NEW YORK (GenomeWeb) – A significant majority of Americans are not familiar with personalized medicine, but when told how it could be used to tailor treatments or to assess their disease risk, they believe insurance companies should cover such technologies, according to the results of a survey published today.

When the concept and practice of personalized medicine was explained to those who had not heard about it before — and examples were provided of tests that are already in use — around 65 percent of respondents had a positive reaction to it.

The survey, conducted by KRC Research for the Personalized Medicine Coalition, found that 62 percent of people did not recall having read or heard anything about the term personalized medicine. Even among the 38 percent who said they have heard the term, only two in 10 said they are very informed on the matter. KRC conducted the telephone survey of 1,000 adults in March.

"What we saw in the survey is that people have some kind of a vague notion of what it is, but they're very unclear … they don't have any concrete sense … and [their] knowledge is really, really shallow on the topic," Mark Richards, KRC's senior VP and management supervisor, told GenomeWeb Daily News.

To PMC, these results suggest that as more consumers hear about personalized medicine, or become familiar with genetic and pharmacogenetic tests, they are more likely to want them to be covered by insurance. But these results also present a challenge, Amy Miller, executive VP for policy at PMC, told GWDN.

"These findings point to the need of the entire [personalized medicine] community to raise awareness of what personalized medicine is and is not. Changing how the public perceives personalized medicine will be much more challenging if we don't seize the opportunity now to define it for the public," Miller said.

Even though they acknowledged that personalized medical tests and treatments may be more expensive than some conventional ones, 63 percent of respondents said they want insurance companies to cover these technologies.

As one respondent to the survey put it, "[Insurers] should look at a cost benefit. If I'm going to take a $1,000 test and it's going to save us $20,000 over the next five years, take the test."

Consumers are intrigued by the potential of personalized medicine, the survey found, and 69 percent said they would like to know more about how it works. These interested consumers also have a lot of questions about how well personalized medicine works and how accurate the tests are, what risks it carries, how much it costs, if insurance covers it, and how the data might be used.

The survey found that when personalized medicine was explained to people and they were given examples of some tests that are already in use, they became excited about the possibility that such technologies could provide important treatment information, reduce side effects, and avoid trial-and-error medicine. The respondents were particularly optimistic about the possibility of physicians being able to choose which treatments might work best for them, the survey found.

Richards told GWDN that only about 10 percent of the respondents said they had heard about personalized medicine from their doctors, but most of those who had heard about it were first exposed from media reports.

Miller pointed out that many people may have experienced personalized medicine – by having undergone genetic or pharmacogenetic tests, for example – without knowing it. "It is very possible that many respondents don't know the term, but have experienced a change in healthcare," she said.

"We can't talk about personalized medicine and public awareness without talking about direct-to-consumer testing," she added. "As we have more and more examples of personalized medicine improving care, I think more and more people will demand it."

For example, Miller noted, in a focus group KRC conducted last year that preceded this survey, people who had heard about personalized medicine in breast cancer wanted to know "why don't we have this for everything, in diabetes, and in healthcare [in general]," she said.

"When people hear about the applications in personalized medicine, what happens is they sit up, and they get excited about it," Richards said. "Ultimately, people's goal is to get well, and they're trying to get well with the least invasive and fasted approach possible. So, the idea of being able to take some tests that can make the decision a little bit more informed is very appealing."