Posted Sept 2, 2010
MINNEAPOLIS – The Poikonen family’s first stop at the Minneapolis State Fair Thursday morning was for nine pronto pups.
Their second? The University of Minnesota building, where Melissa Poikonen and three of her children answered health questions and gave DNA samples as part of an ambitious new research project on human genetics.
Consenting to the U’s “Gopher Kids” study wasn’t part of the Poikonens’ fair plan, but a recruiter quickly convinced the Mound, Minn., family to take part.
“My son just wanted a sweatshirt,” said Darren Poikonen, who watched as volunteers took his kids’ blood pressure. “We didn’t know about this until we were in here.”
University of Minnesota researchers, who announced plans for the research project earlier this summer, were surprised by the wave of volunteers who arrived early on the fair’s first day. Their goal by Labor Day is to collect DNA and health information from 500 children, along with their biological parents, for research that could ultimately map out the genetics of healthy children – and thereby identify the genetics that lead to childhood diseases.
Lead researcher Logan Spector anticipated reaching that goal because of the throngs the fair attracts and the state pride it inspires. But even he was surprised with Thursday’s turnout. As of midday, the study had already enrolled 200 children.
“They opened the door, and somebody said ‘I want to do the Gopher Kids study,'” Spector said. “Amazing.”
Opponents have criticized the study for being vague about how DNA samples will be protected and used, and for recruiting at an entertainment venue where participants might not be thinking seriously about the ramifications of giving away genetic information.
“The chaotic and otherwise jovial atmosphere of a state fair could not be further opposed from a clinic, lab, or other appropriately focused setting for gaining fully informed consent,” wrote Doug Pet of the California-based Center for Genetics and Society.
Concerns like that didn’t stop Susan Ritt of St. Paul, Minn. She volunteered with her 8- and 9-year-old children shortly after letting them climb on John Deere tractors at Machinery Hill.
“It’s not Billy Bob’s DNA Collection!” said Ritt, who has also volunteered in a heart study. “It’s the U.”
The genetic mapping that Spector hopes to pursue would require thousands of children and parents volunteering over many years. This initial phase is simply to evaluate whether the fair works for recruitment, and whether families return for follow-up screenings in 2011 and 2012. (The researchers give free fair tickets to participating families for the next two years, along with U of M backpacks and free ride tickets for this year.)
“This could turn into a lifelong study,” Spector said, “something that has a lot of potential and could really put Minnesota on the map for genetics.”
Spector said families receive consent forms that explain the study and their rights, including the right to back out at any time and have their DNA samples destroyed without question.
On Thursday, however, it turned out that one of the study’s biggest challenges was for kids to produce enough spit to reach the fill line on the DNA collection tubes.
Nine-year-old Bailey Poikonen was getting a dry mouth, despite swallowing sugar packets the university researchers gave her to produce saliva.
“One more good one,” her mother said, eyeing the fill line. “Maybe a bit more sugar.”
The Poikonens also said they trusted the U to safeguard their genetic data. Darren joked that maybe researchers would clone Bailey, so she could finally have a sister to go along with four brothers.
The goodwill started to erode for the Poikonens after a half-hour of questions and tests amid a crowd of other families. Bailey wanted to see animals while her younger brothers grew restless in their stroller. It was only 10 a.m., though, and their father wasn’t feeling too rushed.
“There’ll still be some pronto pups left,” he said.