Family ties

With one year left to go of a three-year federal grant, scientists investigating the Fallon cancer cluster are running into an obstacle.

For the most accurate information about what could have caused 17 children in Fallon to develop acute lymphoblastic leukemia between 1997 and 2001, researchers need the full participation of the families. Problem is, they can’t find them all.

“We don’t even know who these people are,” said grantee Dr. Joseph Wiemels of the University of California, San Francisco. He was speaking at the second annual Fallon cancer cluster symposium held earlier this month at the University of Nevada, Reno. “Of the 17 families, we have been unable to contact seven of them.”

The list of families was widely circulated in the early 2000s, but apparently, the information is harder to find now.

Though the cluster appears to have abated, the researchers said it’s still important to determine its cause.

Wiemels, who is studying about 1,100 cases of childhood leukemia in San Francisco, says it’s routine in California and other parts of the nation to get the addresses and contact information for cancer patients from the states’ Cancer Registry to aid in research. However, in Nevada, consent from the patients is required for release of that information. So the researchers need the patients’ permission to find them, but they don’t know where to ask.

Wiemels says he’s trying to get the Nevada statute changed, and that it should be done this year in order to benefit the Fallon study, whose federal $688,000 grant ends next year. “It’s what makes cancer research work in California, and it’s widely used in the nation,” he said. “We need Nevada cancer advocates to contact the legislature.”

Wiemels said he’d like to get contacts from the Centers for Disease Control and Prevention, but the organization is bound by the same rules: “They want the families to give consent, but we have no way of contacting them to ask,” said Wiemels.

When asked by an audience member if Wiemels has advertised in Fallon to find the remaining families, he said local officials have discouraged him from doing so.

Potentially useful insights into the role of tungsten and other chemicals in Fallon’s air and water, genetics and adenovirus have resulted from the studies, though researchers emphasize their data is currently preliminary. (See “Of mice and men,” Greenspace, this issue) Conclusive data is due next year, which will be presented at a third cancer cluster symposium.

“People expect the home run; they expect one answer,” said Dr. William Murphy of UNR at the symposium. “It’s such a complex disease.”

Even in a small town, like Fallon, where only one type of cancer is involved in the cluster, its source is likely multicausal, said Murphy. But the research now underway can lead to insights other researchers can build upon. “It’s naive of us to think we’re going to get that home run in two or three years of research,” said Murphy.