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Children Enrolled in Parents’ Research: A Uniquely Vulnerable Group in Need of Oversight and Protection

In January 2009, the New York Times published on the front page an article about scientists conducting research on their own young children.1 Of the approximately 60 comments responding to the article, more were negative about or skeptical of the practices described than were supportive of them. And no wonder: the Times article spotlighted some excessive behaviors—one dad strapped a camera to his newborn’s forehead, and another recorded 70% of his son’s waking hours for three years through hidden cameras and microphones. To be clear, some practices described are not “research” in the way most scientists understand it—a systematic, protocol-driven inquiry reviewed and approved by a research ethics committee/institutional review board (IRB) and undertaken to contribute to “generalizable knowledge.”2 Recognizing this, many readers objected to describing the practices as research, expressing concern about the scientific validity and integrity of any findings that might result. Others, however, expressed concern for the children.Many of the questions prompted by the New York Times article apply equally when scientists enroll their own children in IRB-approved studies. Do minor children3 enrolled in their parents’ research represent a potentially—and perhaps especially—vulnerable population? Are there added risks when a child participates in his or her parents’ research—risks of harm, for example, to the parent-child relationship? Have investigator-parents given these risks due consideration? Is the permission/assent process compromised in such situations? Can investigator-parents maintain appropriate attention to scientific objectivity and participant safety? Are these private decisions that belong to families or ones that institutions and IRBs should scrutinize?

We could find no formal guidance that addresses these questions. The federal regulations governing federally funded research or research on investigational drugs, while containing somewhat detailed rules about the permissibility of research on children generally, do not address the situation of an investigator’s own child participating in his or her parent’s research. The Office for Human Research Protections (OHRP) does not appear to have issued any formal guidance on the matter. Nor do any of the OHRP determination letters from 2004 to 2011 mention the recruitment or enrollment of children in their parents’ research.4Further, a review of institutional Web sites for the top 10 National Institutes of Health–funded institutions of 2009 revealed no guidance or even notice of this practice.5Finally, a comprehensive literature search indicates that, when theNew York Timesarticle appeared, this practice had received little, if any, academic or professional attention.6

The lack of serious attention given to this issue to date might indicate that the practice is either exceedingly rare or only occurs in the most innocuous of circumstances. More likely it has simply escaped scrutiny. History reveals a long practice of researchers conducting research on their own children, from Jonas Salk, who injected his children with his polio vaccine, to Jean Piaget, who developed theories of childhood development based in part on systematic observations of his own children.7The recentNew York Timesarticle indicates that this tradition of conducting research on one’s own children continues today, as does anecdotal evidence gathered by asking colleagues at various institutions. The anticipated pressures of tomorrow’s research environment will continue to make the child of a researcher8an especially attractive recruit—he or she is easily accessible, may be predisposed to participate, is apt to show up for appointments, and does not require costly, formal recruiting tactics. The issue then is unlikely to go away.

Lois L. Shepherd, Katherine Read, and Donna T. Chen, “Children Enrolled in Parents’ Research: A Uniquely Vulnerable Group in Need of Oversight and Protection,”IRB: Ethics & Human Research35, no. 3 (2013): 1-8.