Genetics and personalized medicine are not top of mind for the general public in the U.S., according to a recent survey from GenomeWeb and the Personalized Medicine Coalition.
The findings might be surprising to come, considering the rapid expansion of the genetic testing industry, more consumers ordering genetic testing online, and the growing list of molecularly informed personalized treatments.
According to the research, an average of 14 new genetic tests are launched on the market each day, and by the end of 2017, the number of consumers who purchased genetic testing online to learn their ancestry or genetic risks for diseases more than doubled to 12 million. Meanwhile, the U.S. Food and Drug Administration (FDA) last year approved a record 16 new personalized drugs.
Nonetheless, personalized medicine and genetics are not topics that spring to most people's minds when they think of the latest advances in healthcare. Importantly, awareness of personalized medicine is still low within the general public and not necessarily improving, the research found.
In the online survey, more than 1,000 U.S. adults were asked initially to name advances they thought had the potential to positively change healthcare. Around one-third mentioned advances in treatments for diseases like cancer or stem cell research, but only around 16 percent mentioned innovations in technology or diagnostics.
Three percent mentioned genetics and two percent thought of DNA testing, but less than one percent (three people) brought up personalized medicine on their own. Respondents in this survey were more likely to recognize these terms with a little help. When given a list of healthcare terms and asked if they had heard or read something about them, 29 percent noted familiarity with personalized medicine, 15 percent indicated they had heard of precision medicine, and 24 percent said they had heard of individualized medicine. In comparison, 38 percent of respondents had said they'd heard of personalized medicine in 2014.
Part of the problem, researchers believe, may be that there are so many ways of describing the concept of treating a person based on genetic or other biomarker information. "This is an example of wanting to use the right words, but not necessarily using the rights words with the people we're really trying to educate and inform," said Erica Ramos, president of the National Society of Genetic Counselors
The National Institutes of Health’s (NIH) “All of Us” Research Program, established by the White House in 2015, aims to advance precision medicine by studying the health data of 1 million diverse Americans over the next five years. The program hit a major milestone when the enrollment beta phase ended and the program’s open national enrollment launched on May 6.
But ever since the initiative was launched, the sector has been divided over which term to use—the familiar personalized medicine or precision medicine. "Everyone has their own tweak on what those things are, but the reality is the things we [inside the field] are differentiating are not the things people in the broader community are thinking about," Ramos said. "It can get very confusing, and it would be helpful to settle on some definitions of what these things mean so we can communicate the right message to the general population."
To this point, in this survey, less than 10 percent said they had heard of the All of Us Research Program or the Precision Medicine Initiative, which may be because until recently the project has been quietly testing out its enrollment capabilities in beta phase.
As such, the researchers found that the survey findings underscore the importance of the All of Us Research Program. "Researchers need more data to make the discoveries that will eventually make precision medicine a greater reality," Stephanie Devaney, deputy director of the All of Us Research Program said in a statement. "When that happens, when precision medicine begins to benefit more people and their friends and family, I expect that we'll see more of a shift in public awareness."
What’s more, in engaging with different community groups, however, the All of Us Research Program has found that while people may not necessarily know the terms "personalized medicine" or "precision medicine," what they do grasp pretty well is that people are all different and have different health needs. "What really matters is that people understand why we need research and what efforts like All of Us aim to do," Devaney said. "The terms we use matter less than the outcomes that result from our national focus on this area of science."