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GPPC Survey Finds Most Americans Would Support Large-scale Genomic Cohort Study

NEW YORK (GenomeWeb News) – A survey made public today suggests that a majority of people in the US may be willing to participate in large-scale, long-term genomic studies. 
More than four in five Americans say that they support the idea of a nationwide study of how genes interact with environmental and lifestyle factors, and three out of five say they would agree to participate in such a study, according to the survey released today by the Genetics and Public Policy Center at Johns Hopkins University.
The survey included responses from 4,695 US adults from diverse racial backgrounds and from all over the country. It asked respondents about their views on, and willingness to participate in, a large cohort study for genetics, the environment, and lifestyle that is national in scope and could be used much in the way that the Framingham Heart Study has been used for many purposes.
Such a study would collect DNA and other samples from at least 500,000 people who represent the US population, and then follow them over many years to find out how their particular genomes interact with lifestyle and environmental factors in ways that affect their health.
“Our survey found that widespread support exists in the general public for a large, genetic cohort study. What’s more, we found little variation in that support among different demographic groups,” said David Kaufman, a project director at the GPPC and a lead author of the paper on the survey, which was funded by the National Human Genome Research Institute.
GPPC presented the information today at the American Society of Human Genetics’ annual meeting in Philadelphia, alongside a paper that was published in an advance online edition of the journal Genetics and Medicine.
“It appears people aren’t opposed to the general idea, and they can see themselves walking through the door,” Kaufman said at a media briefing today at ASHG.
When survey respondents were asked about their willingness to participate in a large genetic cohort study, 60 percent said that they would either definitely or probably participate in such a study if they were asked, and 84 percent of respondents were supportive of the study.
The survey found that all demographic groups surveyed -- whites, Hispanics, African Americans, Asians, American Indians, and Alaska Natives -- would be willing to participate, though support was slightly lower among American Indians and Alaska Natives. However, there were other indicators of feelings about the study. For example, a household income of $75,000 or greater and having a bachelors degree were independently associated with increased willingness to participate in the study, and younger respondents were “significantly more likely to say they would participate,” according to the study.
The most important factors influencing people’s willingness to commit to the study were the commitment to return research results back to volunteers, and an offer of compensation for their trouble. Around two-thirds of respondents said that receiving health information would be “a very important benefit” for the study, whereas around one-third said that money for compensation would be important in their decision.
“The public’s eagerness to receive individual research results suggests that the research community may need to reassess its stance of ‘protecting’ research participants from their data and look for practical ways to return such results,” Kathy Hudson, who directs the center and is senior author on the paper, said in a statement.
“To many of us, the prospect of returning research results seems impractical,” Kaufman said at the press briefing. But, he noted, offering such information may significantly decrease the number of doors researchers have to knock on to get a large number of participants. “There may be some pragmatism to considering at least some kind of research result,” he added. 

People want these kinds of results — whether they’re actionable or not and whether they’re genetic or generic, Kaufman added.

The survey also found that respondents who had just viewed a video describing the study were significantly more likely to support it than those who read a text describing the research, with 84 percent of those who had just seen the video saying that it “definitely” should be done.
“Establishing the existence of wide public support for the proposed NIH cohort study is an important and necessary step, but will not be sufficient to launch such an ambitious project,” the authors wrote. “Participating communities, public officials, and funders must believe that the study will return adequate benefits to its participants before they will allocate needed resources.”