NEW YORK (GenomeWeb) – Healthy early adopters of sequencing make few lifestyle changes after receiving their results, according to findings thus far from the Personal Genome Sequencing Outcomes (PeopleSeq) Consortium.
The PeopleSeq Consortium, made up of both academic and commercial personal genome sequencing efforts, formed in 2014 to assess the effects of sequencing healthy individuals. The consortium has now surveyed more than 500 individuals who underwent personal genome or exome sequencing through the first four projects to join the association.
As it reported in Genome Medicine last night, the consortium found that most individuals sought sequencing out of curiosity, despite some privacy concerns. Additionally, while about half the participants discussed their results with a healthcare provider, few made diet, exercise, or insurance coverage changes based on what they learned.
"These healthy individuals who underwent predispositional sequencing were not deterred by concerns of privacy of their genomic information or possible insurance discrimination," senior author Robert Green from Brigham and Women's Hospital and his colleagues wrote in their paper. "Participants were enthusiastic about their experience and not distressed by their results."
The researchers invited 1,395 individuals from four efforts — the Harvard Personal Genome Project, Baylor College of Medicine's Young Presidents and MD/PhD Genome Projects, Mount Sinai's HealthySeq project, and Illumina's Understand Your Genome program — to take a survey. Of these, 543 individuals completed a survey asking about their motivations to undergo, concerns about, and responses to sequencing.
Most of the early adopters surveyed were male, white, with a college degree, and with a high average annual household income. The researchers noted that these individuals might not be representative of the wider population, but they still suggested that the participants could provide insight into the utility of sequencing healthy individuals.
Nearly all — 98 percent of those surveyed — said they sought sequencing out of curiosity, the researchers found, adding that they were interested in learning about their personal disease risk. Their worries about undergoing personal predictive genome sequencing reflected that interest, as about 60 percent said they were concerned about how well the results would predict their future disease and nearly 57 percent said they were concerned about the complexity of interpreting genetic variants.
They were not, however, too worried about privacy issues, with about 13 percent citing it as "very concerning."
Slightly more than half the respondents said they discussed their results with a healthcare provider after receiving them, and those that did said they were somewhat or very satisfied with their discussions.
Nearly 40 percent of participants said they learned something new to improve their health and about 60 percent said that undergoing sequencing made them feel more in control of their health. However, only about 12 percent of respondents said they made lifestyle changes based on their results. Nine percent said they were eating more healthfully and 8.6 percent said they were exercising more in light of their results.
More than half the participants — 54.6 percent — were disappointed their results did not provide them with more information.
Still, 88.5 percent of respondents said undergoing sequencing was somewhat or very valuable while fewer than 3 percent said they regretted doing it.
These results, the researchers noted, don't support many of the worries about negative influences of personal predictive genome sequencing. Instead, participants felt empowered and not distressed by their results, they said.
In the future, the researchers said they plan to ask participants about any associated healthcare costs to additionally gauge the economic effect of sequencing healthy individuals.