Ethical?: The Child in a Study and Parent is the Investigator

There is a challenging ethical question that is posed in an article in the current Journal of the American Medical Association May 27 2009 titled "Parent-Investigators A Dilemma" by David B. Resnick, JD, PhD. It's about whether medical investigators or those investigators who do research in social science should be permitted to use their own children in their studies or trials. I present an excerpt from the beginning of the article below. Unfortunately, the article cannot be accessed online except by subscription.

A recent news story reported that some psychologists and neuroscientists have used their children as study participants.1 In one case, a neurology professor had 3 of his children undergo a brain scan with magnetic resonance imaging. In a language development study, a psychologist videotaped 70% of his son's waking hours for the first 3 years of his life.1 Other investigators have also conducted research on their own children, including Edward Jenner,2 who tested his smallpox vaccine on his 11-month-old son; Jonas Salk, who tested his polio vaccine on his own children; and psychologist Jean Piaget, who constructed his theories of child development based on studies of his own children.

Should investigators conduct research on their own children? Federal research regulations3 do not address this issue and regulatory agencies, such as the Office of Human Research Protections,4 have no policies dealing with it. Other research guidelines, such as the Nuremberg Code5 and the Helsinki Declaration,6 also do not address the issue of parent-investigators. When laws and professional codes do not provide guidance concerning human research, investigators and committees that oversee research, such as institutional review boards (IRBs), must rely on their ethical judgment to decide.7

So, do you find any conflict of interest and how would you express it? If the parent is the surrogate decision-maker for a young child, how can the parent make an unbiased decision about the risks and benefit for the child participating in the study if the parent is also the investigator? Might the presence of the child, cause the parent to change the protocol of the study? What is any benefit for the child to be part of the study? Would it make any difference if the investigation was a medical one where the child might be exposed to a drug or procedure as compared with a social-science study where the child is asked questions or behavior is being observed? Should official committees that rule on the ethics of a scientific investigation be notified by the investigator that his or her child is within the study? I would be most interested to read the views of my visitors on this issue. ..Maurice.