All in the family

New York, Jan. 18: Even before his son was born, Pawan Sinha saw unique potential.

At a birthing class, 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.

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 studying their children allows for more in-depth research and that the children make reliable participants in an era of scarce research financing.

“You need subjects, and they’re hard to get,” said Deborah Linebarger, a developmental psychologist in the Children’s Media Lab at the University of Pennsylvania who has involved her four children in her studies of the effects of the media on children.

Stephen M. Camarata at the medical school at Vanderbilt has involved all seven of his children in studies of learning problems and speech.

And Deb Roy, at MIT, embedded 11 video cameras and 14 microphones in ceilings throughout his house, recording 70 per cent of his son’s waking hours for his first three years 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, 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, the director of the Center for Research Integrity at the Children’s Hospital of Philadelphia. “Once that parent becomes an investigator, it sets up an immediate potential conflict of interest.”

Researchers themselves acknowledge the challenge. “I don’t want them to feel uncomfortable, like I’m invading their privacy,” said Linebarger.

Scientists using human subjects are expected to seek approval from institutional review boards, which consider federal regulations on risk, coercion of subjects and researcher bias. Some scientists said that in case of multiple subjects they considered it unnecessary to report their child’s participation. Some asserted that involving their children proved risks were minimal.

MIT’s review board chairman Leigh Firn said the scale of Roy’s project prompted questions about privacy — for his son, but also for visitors to his home.

The board consulted an independent expert and urged safeguards. Cameras and microphones had to be easily turned off. Visitors signed consent forms. People could have their video segments erased — including his son, once he is 18.

Roy has students who catalogue the recordings sign confidentiality agreements, and they are asked to report anything “potentially embarrassing”. Plus, every room has an “oops button” to erase regretted utterances instantly.

Now, as he analyses his son’s vocabulary bursts, and studies interaction between his son and grown-ups, he said some scientists say: “My God, this is such a valuable database. Why don’t you share it more openly?” He said he had been denied a federal grant because he would not.

Like Sinha, he is expanding the project to include other children, applying the research to autism.

Sinha’s wife, Pam, though a scientist herself, was “quite opposed to this idea of experimentation” on their son. So “it had to be done surreptitiously”, he said. It is still, Sinha said, “a sore topic between us”.