The Cleveland Plain Dealer begins a multi-part story today on the use of cord-blood stem cell transplants for Tay Sachs children. Some years ago I pointed out in the context of Penn’s work on innovative gene therapy for a different set of childhood genetic disorders that parents with dying children are not in a strong position to offer truly informed consent when a cutting edge innovative intervention is proposed. This story makes that point abundantly clear–fatal disease in a child is a hugely ‘coercive’ factor in the decisions that parents make.
Arthur Caplan