Genetic testing holds great promise for the future. Information generated by genetic testing may provide information that leads to new treatments for common diseases such as heart disease and diabetes.
But how do parents really feel about testing their child’s DNA for diseases that may not have an available treatment, and how willing are they to store their child’s DNA in a government biobank to help yield new strategies for disease treatment and prevention in the future?
According to a report released by the University of Michigan C.S. Mott Children’s Hospital National Poll on Children’s Health, slightly less than 40 percent of parents are willing to have their child’s DNA stored in a government biobank, a collection of DNA from a group of individuals in the population that is linked to other health information, including medical records.
The National Poll on Children’s Health also reveals that 53 percent of parents are willing to have their child undergo genetic testing to determine if their child is at increased risk for developing a disease even when no treatment exists while 39 percent would agree to such genetic testing only when there is an effective treatment. “Some parents feel that even without a treatment, genetic testing will better prepare them to deal with their child’s illness. Others may simply hope that testing may lead to the faster development of a cure,” says lead researcher Beth A. Tarini, M.D., clinical lecturer and member of the Child Health Evaluation Research (CHEAR) Unit in the U-M Division of General Pediatrics.
Adds Matthew M. Davis, M.D., M.A.P.P., director of the National Poll on Children’s Health, part of the U-M Department of Pediatrics and Communicable Diseases and the CHEAR Unit: “There’s considerable debate in the pediatric community about genetic testing when there is no cure for a particular disease. This is a very difficult issue, and that’s why we felt it was important to bring that discussion out of the hospital hallways and into the public. Our poll found that the public indeed has some strong, yet varied opinions about how genetic tests should be used.”
Genetic testing, too, can be done at any age to check for a wide range of medical disorders. Each year through state newborn screening programs, about 4 million newborns in the United States undergo testing for several genetic diseases including sickle cell, cystic fibrosis, and phenylketonuria (PKU).
Using just a few drops of blood, genetic testing may indicate whether a child is at risk for developing a disease later in life. These advances, coupled with an increase in genetic testing, have led to the idea of DNA biobanks. This DNA collection, Tarini says, has the potential to identify ways to prevent and treat common diseases like heart disease, asthma and diabetes. Already, the United Kingdom’s DNA biobank has identified new genes related to diabetes and Crohn’s disease.
While genetic testing and DNA biobanks are promising new health care tools, they raise many questions: Who should be tested and when; should a child be tested for diseases that are not treatable; do parents want to learn if their child is at an increased risk for disease; and would the public be willing to store their DNA and their children’s DNA in a government biobank for research purposes?
To answer these questions, the National Poll on Children’s Health, in collaboration with Knowledge Networks, Inc., conducted a national online survey in March 2007. The survey was administered to a random sample of 2,076 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 two-thirds of the sample were parents.
When asked if they would store their child’s DNA in a government DNA biobank, 38 percent of parents say they are willing to have their children's DNA stored. Likewise, 38 percent of adults (both those with and without children) are willing to store their DNA in a biobank.
Reluctance to participate in a DNA biobank may reflect concerns about the potential for such information to lead to genetic discrimination that might affect a person's ability to get a job or be covered by health insurance. The Genetic Information Nondiscrimination Act, currently being considered by Congress to prevent such discrimination, may be a crucial step in helping to ease public fears about participation in DNA biobanks and about genetic testing overall.
“An important way to investigate the genetic basis of diseases is to study the broadest population possible, so that both sick and well, and old and young people are included in the sample,” notes Tarini. “That’s why a population-based biobank offers researchers the best chance of finding a meaningful genetic association for a particular disease.”
Most notably, adults who favor genetic testing for certain diseases even when a treatment is not available were more likely to say they would store their DNA in a government biobank than adults who favored genetic testing only with available treatments, says Davis, associate professor of general pediatrics and internal medicine at the U-M Medical School, and associate professor of public policy at the Gerald R. Ford School of Public Policy.
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