Ethics and Research with Children: A Case-Based Approach

By Eric Kodish | Go to book overview

15
Near the Boundary of Research: Roles, Responsibilities, and Resource Allocation

Christopher Church, Victor M. Santana, Pamela S. Hinds, and Edwin M. Horwitz


CASE DESCRIPTION

A 7-year-old female with infantile malignant osteopetrosis was referred to a pediatric research center for enrollment on a research protocol to study hematopoietic stem cell transplantation (HSCT) as a potentially curative effort. Osteopetrosis is a rare, heritable skeletal disease in which the lack of normal osteoclast function results in a gradual and cumulative formation of bone, resulting in excessive bone deposition. Medical complications include numerous bone fractures, growth failure, delayed tooth eruption, blindness, and other sensory and neurological impairments. Because osteopetrosis obliterates the marrow space and is itself associated with defective leukocyte function, chronic infections that are refractory to treatment are common. If left untreated, children with osteopetrosis are severely impaired, and only 30% survive to 6 years of age. Recent but limited research findings suggest that HSCT may ameliorate the gradually progressive disease. However, no therapy has been identified as unequivocally curative. Because osteopetrosis is an uncommon disease, most patients are referred to academic or research centers.

Originally diagnosed and treated in a developing country, this child came to a university hospital in the United States at 6 years of age. There, the child received megadoses of vitamins and gamma interferon to ameliorate the sequelae of osteopetrosis, and she was placed on chronic antibiotics for recurring infections. Because the parents were uninsured aliens, the university hospital did not offer the more expensive, but potentially curative, treatment option of HSCT. One year later, the physician at the university hospital referred the child to a pediatric research center, after learning that that center's active research

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