Ethics and Research with Children: A Case-Based Approach

By Eric Kodish | Go to book overview

17
When Eligibility Criteria Clash With Personal Treatment Choice: A Dilemma of Clinical Research

Benjamin Wilfond and Fabio Candotti


CASE DESCRIPTION

Joshua is a 15 year old with a congenital immune disorder that has resulted in moderate chronic lung disease (Lung function [FEV] is 50% predicted) and poor growth (height < third percentile). His lung function and growth have been stable for the last 4 years, and he has not had significant life-threatening infections. His current treatments include daily oral antibiotics and monthly injections of intravenous immune globulin (IVIG). Recently the cause of his immune disorder has been identified as adenosine deaminase deficiency (ADA), a form of severe combined immune deficiency (SCID; Hershfield & Mitchell, 2001). SCID is usually diagnosed shortly after birth and generally results in high susceptibility to recurrent and life-threatening infections. Transplantation of allogeneic hematopoietic stem cells (HSCT) can be curative for ADA-SCID and is highly successful when HLA-identical sibling donors are available. Unfortunately, most patients do not have a matched sibling donor, and the results of HSCT from haplo-identical parental donors is much less satisfactory (Antoine et al., 2003). An alternative form treatment for patients lacking an HLAidentical donor is represented by enzyme replacement with polyethyleneglycolated adenosine deaminase (PEG-ADA), given as a weekly intramuscular (IM) injection.

Joshua does not have siblings and his family declined a mismatched HSCT that was offered to them before the diagnosis of ADA deficiency was made. His primary immunologist now recommends that Joshua begin PEG-ADA. Joshua refuses because he is concerned about the pain of weekly IM injections. He is satisfied that his current treatment plan has kept him stable. His parents are supportive of his decision. They have learned that PEG-ADA will not work in 20% of the cases and that in the remaining cases it will provide protective,

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