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Boo said it’s important for prospective donors to understand that by signing up for the registry, they’ve made a commitment to help a patient.

Judkins, 23, of Atkinson, N.H., said he thinks it’s “absurd” to charge insurance companies $4,000 for the test.

“If people are going to donate, that money should be spent on research … to spend it on a model to try to draw people in, that kind of nullifies the point,” he said.

(This version CORRECTS day in 3rd paragraph to Tuesday, instead of Monday.)