When scientists announced the completed sequencing of all the genes in the human genome, some parents didn't know what a genome is. Others have heard of something discovered 50 years ago about DNA, but have no idea why it's such a big deal. And, most are tired of feeling intimidated because their kids know more about genetics than they do.
So why is the subject compelling? The trend is shifting. Recently, there have been studies drawing more attention to the topic - particularly with parents favoring genetic tests that might detect common diseases their children could experience. The whole subject compels one to think more about genetics and what people actually know on the topic.
How to find out more
Though a plethora of information is available on the Internet, the Genetics Home Reference, the National Library of Medicine's Web site, has consumer information about genetic conditions and the genes or chromosomes related to those conditions. It provides basic information about genetics and medicine for anyone who is interested in genetics, but needs a simplified explanation of the science.
This multi-media web site provides answers to basic questions like "What is a gene?" or "What is a protein?" The web site also describes current research by scientists and how what they discover in the laboratory today could change tomorrow's medicine.
The site is indexed by disease or medical condition, so users can choose to browse through the entire site or visit the pages of interest. People with a special interest in breast cancer, for example, can learn about genes regulating metastasis - the spread of aggressive forms of breast cancer to other organs in the body. A glossary defines all scientific and medical terminology and additional resources are provided for those who want to know more.
Genetic testing on children
According to a new study published in the online edition of the journal Pediatrics, parents are generally accepting of the idea of genetic testing to determine their children's susceptibility to certain health conditions. The research team concluded that "as genetic testing becomes more common, pediatricians should anticipate parents' interest in testing children and help them weigh the risks and benefits of this testing."
Two hundred and nineteen parents answered questions about their attitudes to and beliefs about the risks and benefits of genetic testing. An article by Ramond MacDougall of the National Human Genome Institute, says "the set of tests scanned DNA for individual alterations that would increase children's susceptibility to colon, skin and lung cancer; heart disease; osteoporosis; high blood pressure; high cholesterol; and type 2 diabetes. Benefits of the testing included reassurance, knowledge and prevention, while potential risks included an invasion of privacy and psychological discomfort."
The study found that parents considered the benefits of testing worth the risks. MacDougall says "they were more likely to want to have their child tested if they thought their child was at risk for disease, were interested in gene-health links and anticipated a positive emotional reaction to learning their child was at a decreased risk of disease." The study also found that parents may not accurately anticipate their emotional reaction to genetic information about their children's risk for common disease conditions and may benefit from further discussion on testing to asses both positive and negative value.
The diverse study team, representing different disciplines and perspectives, included experts in bioethics, pediatrics, health intervention, clinical psychology and risk communication. Those involved affirmed the importance of bringing together different perspectives to answer important questions, thus helping parents grasp the study of genetics.
Sources:
Genetics Home Reference "Your Guide to Understanding Genetic Conditions"
National Human Genome Institute "Parents favor genetic tests that might detect children's susceptibility to common diseases"
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