The Ethics of Pediatric Research

Head, Unit on Vulnerable Populations, Department of Bioethics, National Institutes of Health

CHAPTER 1: PREFACE
A. A Vaccine for Rotavirus
B. The Prevalence of non-Beneficial Pediatric Research
C. Questioning the Acceptability of non-Beneficial Pediatric Research
D. Method of the Book
E. Lessons Learned
F. An Initial Example
G. Outline of the Argument

CHAPTER 2: BACKGROUND
A. Scope of the Debate
B. Terms of the Debate
C. History of Abuses, Early Guidelines
D. Current Regulations
E. Efforts to Increase Pediatric Research
F. The Legal Landscape
G. The (Few) Pediatric Research Cases

CHAPTER 3: EVALUATING THE WORRY
A. Ramsey's Argument
B. The Value of Consent
C. When is Consent Necessary?
D. Why is Consent Valuable?
E. Clarifying the Worry
F. McCormick's Response
G. The Negligible Risks Threshold
H. The Risks of Daily Life Threshold
I. The Routine Examinations Threshold
J. Appeal to Long Term Benefits
K. Helping Children as a Group

CHAPTER 4: PROPOSED JUSTIFICATIONS
A. The Argument thus Far
B. Utilitarianism as an Epithet
C. The Scope of Parental Authority
D. Teaching Children to Be Moral
E. Children's Moral Obligations
F. The View from Behind the Veil of Ignorance

CHAPTER 5: HUMAN INTERESTS AND HUMAN CAUSES
A. Brief Recapitulation
B. Three Conditions on an Acceptable Account
C. Brief (and Prospective) Summary
D. Three Questions on Our Interests
E. Five Categories of Interests
F. All Things Considered Interests
G. Interested in Versus in One's Interests
H. The Causal Nexus of Our Lives
I. The Personal Significance of Making a Contribution: 5 Factors

CHAPTER 6: OUR CONNECTION TO OUR CONTRIBUTIONS
A. The Present Chapter
B. Our (Tenuous?) Connection to Childhood
C. The Value of Youthful Contributions
D. Saying Something Positive
E. Are Contributions Necessarily Active?
F. Striving versus Contributing
G. The Influence and Importance of Causal Inputs
H. In the Valley of Kings

CHAPTER 7: THE VALUE OF PASSIVE CONTRIBUTIONS
A. The Virtuous KKK Member
B. Nazi Era Children
C. The Reluctant Propagandist
D. The Normative Asymmetry Thesis
E. Contributing without Trying
F. Children in Operas, Infants at Political Rallies
G. The Calamitous Discovery
H. The Ubiquity of Competing Considerations
I. Making Decisions for Children
J. The Value of Making a Contribution

CHAPTER 8: IMPLICATIONS FOR NON-BENEFICIAL PEDIATRIC RESEARCH
A. Limits on the Personal Value of Passive Contributions
B. Moral Claims on 3rd Parties
C. The Necessity of Value
D. Minimal Risks and Sliding Scales
E. Exceptional Cases
F. Adults and Older Children First
G. Children Helping Adults


CHAPTER 9: OBJECTIONS AND THE POTENTIAL FOR ABUSE
A. You Will Eat Your Spinach
B. The Unfairness of it All
C. What Happened to Autonomy?
D. Giving Comfort to Scoundrels?
E. The Potential for Abuse
F. Worries about Distribution

CHAPTER 10: CONCLUSION
Notes
Index