Ethics and Research with Children: A Case-Based Approach

By Eric Kodish | Go to book overview

1
Ethics and Research With Children:
An Introduction

Eric Kodish


A CASE STORY

The cure for childhood cancer will not be discovered without research. A new drug that targets the molecular trigger for malignant cell transformation is being studied in children with terminal cancer. I have been taking care of Abby, a twelve-year-old with metastatic osteosarcoma, for the past 18 months. Abby is dying. She is eligible for the drug study, but it holds only the most remote prospect of helping her. At the same time, the drug may be risky and could accelerate her death. Without the participation of children like Abby, knowledge about this new drug and others like it will never be obtained, and the cure for childhood cancer will not be found.

Abby looks at me and asks whether I think she should be in the study. How should I answer her question? Where do I begin to analyze the moral issues that emanate from Abby's story, and how do I balance the rational and emotional components of my human response to Abby and the dilemma we face? Do I owe it to all the children who will get cancer in the next several decades to say yes, or should I protect Abby from further suffering and say no? By asking the question, is Abby looking to me for hope, or is she seeking my permission to quit fighting? Should I defer this decision to her parents, or take responsibility and make a decision as her doctor? I do not know how to best respond to Abby, so I begin by creating this book.


CHILDREN AND RESEARCH

Children like Abby are both vulnerable subjects who need protection from research risks and therapeutic orphans who have been denied access to the benefits of research. In the United States, recent federal mandates have promoted the inclusion of children in clinical research and provided investigators and the phar-

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