Tuesday, January 08, 2013
Attempts to censor medical information
Arrogant swine! And that's an insult to swine! People are too dumb to be given information about their own bodies??
FOR Carole Kushnir, a test that she took out of simple curiosity about her genetic make-up revealed a double risk of cancer. And for Karen Durrett, it led to her meeting a father she had never known - and brought to light a potentially fatal condition.
The women are among 180,000 people who have paid to have their DNA analysed by 23andMe, the world's biggest private genomics company, to assess more than 200 genetic traits and health risks.
That number of customers is expected to soar after the Californian company - which takes its name from the 23 pairs of chromosomes in a normal human cell - cut the cost of a testing kit to $US99 ($94) last month.
The company, co-founded by Anne Wojcicki, the wife of the Google entrepreneur Sergey Brin, plans to reach 1 million clients by the end of this year.
But the boom in business and interest in genomes and genetics has led to controversy about the commercial use of one the most crucial medical breakthroughs of recent years.
For the price of a night out, individuals can learn key elements of their genetic composition and take treatment, or protect their children from hereditary health risks.
Critics, including doctors, bioethicists and geneticists, are concerned people will be overloaded with information that is difficult for them to interpret, and that the test will raise unnecessary health fears or false reassurances, lead to unneeded procedures, or cause stress about conditions that cannot be cured.
"It is unregulated. Much of the information people get is misleading or unreliable and genetic tests are a poor predictor of the big killer diseases," said Helen Wallace, of GeneWatch UK, a genetic watchdog group. "There is also the danger of people receiving scary surprises, without the presence of a doctor, for which they are not prepared."
But recent focus group findings and professional surveys illustrate the diverging opinions about how to use these new weapons.
Almost all the parents surveyed said they wanted to be informed of every risk of disease for their children, even if the condition was untreatable. Most doctors, geneticists and bioethicists believe that only information that could lead to action should be shared.
In an effort to provide guidelines the American College of Medical Genetics and Genomics is drawing up a list of major conditions to search for.
If I were writing in Australian idiom, I would call the would-be censors "bastards" but I gather that is not well understood in America and I don't know of an American equivalent. Australian slang is very rich in derogatory terms: Drongo, nong, galah etc.