Parents Support Genetic Testing, DNA Biobanks

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Parents Support Genetic Testing, DNA Biobanks

http://www.medicalnewstoday.com/medicalnews.php?newsid=74801

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 today 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 M. , 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 ,

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.