HealthLawProf Blog

Editor: Katharine Van Tassel
Concordia University School of Law

Sunday, January 18, 2009

Your Kids as Research Subjects

Interesting and thought-provoking story in the New York Times today about researchers using their children in research.  Pam Belluck reports,

At a birthing class, Dr. Sinha, a neuroscience professor at the Massachusetts Institute of Technology, stunned everyone, including his wife, by saying he was excited about the baby’s birth “because I really want to study him and do experiments with him.” He did, too, strapping a camera on baby Darius’s head, recording what he looked at.  Dr. Sinha is among a new crop of scientists using their children as research subjects.

Other researchers have studied their own children in the past, but sophisticated technology allows modern-day scientists to collect new and more detailed data. The scientists also say that studying their children allows for more in-depth research and that the children make reliable participants in an era of scarce research financing. . . .

Arthur Toga, a neurology professor at the medical school at the University of California, Los Angeles, studying brain change, scanned his three children’s brains using magnetic resonance imaging. . . .  And Deb Roy, at M.I.T., embedded 11 video cameras and 14 microphones in ceilings throughout his house, recording 70 percent of his son’s waking hours for his first three years, amassing 250,000 hours of tape for a language development study he calls the Human Speechome Project.

Some research methods are clearly benign; others, while not obviously dangerous, might not have fully understood effects. Ethicists said they would consider participation in some projects acceptable, even valuable, but raised questions about the effect on the child, on the relationship with the parent, and on the objectivity of the researcher or the data.

“The role of the parent is to protect the child,” said Robert M. Nelson, director of the Center for Research Integrity at Children’s Hospital of Philadelphia. “Once that parent becomes an investigator, it sets up an immediate potential conflict of interest. And it potentially takes the parent-child relationship and distorts it in ways that are unpredictable.”

Researchers themselves acknowledge the challenge of being simultaneously scientist and parent. “I don’t want them to feel uncomfortable, like I’m invading their privacy,” said Dr. Linebarger, who ultimately set some boundaries. “When you mix being a researcher with being a parent, it can put your kids in an unfair place.”

Children have been subjects for some well-known scientist-parents, including Jean Piaget, the child-development theorist. But some past examples would probably not pass ethical muster today.  Jonas Salk injected his children with his polio vaccine. Clarence Leuba, a psychologist, wondering if laughter in response to tickling was learned or innate, forbade tickling of his infant son and daughter, except when he tickled them, wearing a mask to hide his expression. . . .

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