Would You Allow Your Child to Participate in Medical Research?

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Advances in medicine – new treatments, cures, vaccines and medicines – are driven by research involving humans. But when it comes to medical research that requires children to be involved, researchers often struggle to find participants.

The reason? Many parents are often unwilling to allow their children to take part in medical research, fearing that they may be harmed or used as “guinea pigs,” according to a report released today by the University of Michigan C.S. Mott Children’s Hospital National Poll on Children’s Health.

In fact, the report finds that only 30 percent of parents are willing to allow their children to participate in research involving a new medication. In contrast, 77 percent of parents want only FDA-approved medicines for their children. This finding reveals a large gap between the proportion of parents who want safe medicines for their children, and those who are willing to have their children take part in research that could ultimately produce information about medicine safety.

“We know that parents, quite reasonably, may be concerned about having their children participate in medical research,” says Matthew M. Davis, M.D., M.A.P.P., director of the National Poll on Children’s Health. “Parents, however, may not realize how pediatric research has saved lives and helped lives. Research has led to the creation of vaccines, many of which have helped eradicate diseases like diphtheria, polio and small pox within the borders of our country. That’s all thanks to vaccines that have been tested in clinical studies in which children have played a major role.”

Clinical trials during the past 30 years are also responsible for improved survival rates for common childhood cancers, from less than 50 percent to 85 percent, says Valerie Castle, M.D., chair of the Department of Pediatrics and the Ravitz Foundation Professor of Pediatrics and Communicable Diseases at the U-M Health System.

“Parents, physicians and other advocates in the community must encourage a national discourse on the importance of research, and also improved funding for pediatric research to ensure more progress can be made in treating and preventing childhood diseases.” she says.

The National Poll on Children’s Health finds:
• 77 percent of parents want only FDA-approved medicines for their children, but only 30 percent say they will allow their children to participate in research.
• Many parents are willing to consider children’s participation in research if the risk of harm is small.
• 92 percent of parents have never been asked to have their children participate in research.

The report, however, does reveal some very promising results for researchers: Twenty-five percent of parents polled indicated that they would consider allowing their child to participate in research as a healthy volunteer and another 36 percent would consider it if their child had a particular disease being studied.

Most notably, the majority of parents say that the reason their child has never participated in a research study is simply because they’ve never been asked.

“There’s great potential to have even more children participate in research in the future, but we’re not yet reaching a lot of families who would be comfortable with having their children participate in research,” explains Davis, associate professor of general pediatrics and internal medicine at the U-M Medical School, and associate professor of public policy at the U-M Gerald R. Ford School of Public Health.

To capitalize on that potential, Davis says researchers need to involve a broader group of doctors in recruiting and advising children and their parents about research to increase participation. The National Poll on Children’s Health found parents are more willing to have their children participate in research when it is encouraged by their children’s doctor.

C.S. Mott Children’s Hospital is working to improve children’s research
Beyond recruiting more participants, pediatric research faces another challenge: funding. While children make up 20 percent of the U.S. population, only 5 percent of the funding from the National Institutes of Health is allocated for research on pediatric diseases.

In an effort to increase government funding of children’s research, C.S. Mott Children’s Hospital recently joined a coalition made up of the nation’s leading pediatric medical research institutions to support a new approach to the address the continued under-funding of federal support for pediatric research.

The coalition – which has the support of all the major pediatric research societies – recently lined up behind a bill called the Pediatric Research Establishment Act. Introduced by Sen. Sherrod Brown (D-OH) and Sen. Christopher “Kit” Bond (R-MO), the bill is designed to not only authorize increased funding for cutting-edge pediatric reserach, but also create a new structure to maximize the efficiency and effectiveness of pediatric disease research.

“Through this legislation, our hope is to define the resources that would allow us to build an infrastructure to do more pediatric research,” says Castle. “Without increased funding, we’ll limit our opportunities for important breakthroughs in medical research and therapies. Ultimately, it will impair the overall health of our communities, especially since many childhood diseases, including certain cancers and obesity, can have serious implications well into adulthood.” Castle also notes that without increased funding, promising young researchers may be deterred from entering the field.

For its report, the National Poll on Children’s Health used data from a national online survey conducted in December 2007 and January 2008 in collaboration with Knowledge Networks Inc. The survey was administered to a random sample of 2,131 adults, ages 18 and older, who are a part of Knowledge Network’s online KnowledgePanelSM. The sample was subsequently weighted to reflect U.S. population figures from the U.S. Census Bureau. About three-fourths of the sample were households with children.

For the complete report and podcast about poll results, visit the C.S. Mott Children’s Hospital National Poll on Children’s Health online at med.umich.edu/mott/research/chearnpch.html.

The C.S. Mott Children’s Hospital National Poll on Children’s Health – funded by the Department of Pediatrics and Communicable Diseases and part of the CHEAR Unit at the U-M Health System – is designed to measure major health care issues and trends for U.S. children.

Source: University of Michigan Health System

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