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Price of progress: Debating the ethics of charging families to participate in stem cell trials for autism

| | August 9, 2019

During four visits to Panama over nine months, Aaron [a 9-year-old boy with autism] received infusions of stem cells harvested from tissue that lined donated umbilical cords; using stem cells from donated umbilical cord tissue is illegal in the United States. The institute charged $1,800 for each of Aaron’s visits, according to his mother.

Findings from the small trial, published in June in Stem Cells Translational Medicine, suggest that this type of stem cell infusion is safe for children with autism. The trial enrolled 20 autistic children, but did not include a control group who didn’t receive stem cells—and so was not designed to assess the treatment’s effectiveness. Still, it hinted at small improvements in motor skills and social behaviors, according to the study.

[However,] experts question the ethics of making families pay to participate in such trials.

“It’s not right to charge patients for unproven stem cell injections, even in the context of a study,” says Paul Knoepfler, professor of cell biology and human anatomy at the University of California, Davis. “Those running the study financially benefit from it, and stand to benefit if the results turn out a certain way.”

Read full, original post: Experts question rationale for stem cell trial for autism

Related article:  Meet Grunya Sukhareva, the forgotten woman who defined autism
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