SMOKINCHOICES (and other musings)

December 26, 2012

DNA Tests -Snake oil – fear ?

Some DNA tests used to sell ‘snake oil,’ officials say

By Robert Langreth and John Lauerman BLOOMBERG NEWS

April Hauge, a nurse practitioner in Weimar, Calif., spent $500 on a genetic test for her autistic son in 2009 that led to purchasing thousands of dollars in vitamins and supplements. She’s now selling advice on the approach to others.

There’s just one problem: The DNA tests and related treatments have scant backing from science and U.S. government officials. They’re untested, unproven and may constitute “health fraud,” doctors, regulators and concerned parents said.

For alternative-medicine providers in general, the genetic tests are nothing but a “marketing tool” to sell unproven treatments, said James Laidler, a retired physician and adjunct professor at Portland State University whose autistic son has tried alternative therapies.

“You always hear the testimonials from the people who got better, not the people who stayed the same or got worse,” Laidler said. “They don’t want to hear somebody saying this is snake oil.”

  • Doctors and clinics across the nation are using the exploding science of DNA testing to feed anxieties and sell hope to people with hard-to-treat disorders.

Emboldened by meager state and federal regulation, purveyors of alternative medicine offer genetic tests costing hundreds of dollars to worried parents and patients, and then sell advice on supplements and diet based on results purporting to spot disease-causing deficiencies. They claim to be a panacea for everything from autism to the effects of aging.

  • “A lot of this skims on the edge of health fraud,” said Janet Woodcock, director of the Center for Drug Evaluation and Research at the Food and Drug Administration.

Patients and practitioners say the tests and treatments are beneficial. The medical establishment has yet to catch on to the importance of common gene mutations, said Ben Lynch, a licensed naturopathic physician in Seattle and owner of a nearby supplement company.

Lynch said his focus is on diet and lifestyle changes first, before supplements.

  • “I agree with some of these critics who say that if doctors are using genetic tests to sell lots of supplements, that is not ethical,” Lynch said.
  • Mapping the genome is becoming a standard tool of medical care. By searching for mutated genes in tumors, doctors can sometimes target them with drugs to counteract the effect of rogue genes.
  • Researchers once hoped that common genetic variants would help predict the likelihood of major diseases such as autism. But while scientists have documented thousands of statistical associations between genetic variants and diseases, definitive links haven’t been confirmed in most cases.

Alberto Gutierrez, director of the office of in vitro diagnostics and radiological health at the FDA, said the agency is “very concerned” about complex genetic tests being sold by laboratories. Often, it might be difficult even to know who did the testing, he said.

  • “Nobody has looked at the evidence to support these tests,” said Gutierrez. “I am concerned that patients are being given unproven information that may result in less than optimal management of their disease.”

Following public hearings in July 2010, the agency developed guidance for regulating complex genetic and other tests sold by laboratories. The rules have been under review by the Obama administration since late 2011, he said. Until they are finalized, the agency is “somewhat hamstrung” in cracking down on companies, Gutierrez said.

The vast majority of laboratory genetic tests provide valid medical information and are processed accurately and responsibly by licensed professionals, said Alan Mertz, president of the American Clinical Laboratory Association, a Washington-based industry group.

FDA-approval procedures are too expensive and time-consuming for low-volume DNA tests processed by small labs, and would stifle the development of new tests that are now being developed by the hundreds, Mertz said.

  • One area in which genetic testing has taken hold is autism. But many mutations are found in healthy people, and there is no evidence that any of them cause autism, said Daniel Coury, medical director for the Autism Speaks Autism Treatment Network and a developmental pediatrician at Nationwide Children’s Hospital.

“It sounds scientific, but the connection to autism isn’t there,” he said.

(Please see the adjacent post “Alzheimer’s Drug 4 Autistic kids” (12-26-12) for my response to seeking answers to one’s medical problems, by securing Gene information  through DNA testing.  This is almost guaranteed to be fruitless not to say needlessly costly.    For when there is a problem with certain functions within the body and normal expectations can’t be met, nor medical treatment be found which can correct it,  one must realize that the search must be extended outside the body  to some environmental or chemical factor which has harmed the body > and in doing so, has also harmed the genes, which are an integral part of the body.  

I am not meaning to sound callous, but we are living in an unnatural world to which we did not evolve – but here we are, and all must try to cope or learn ways of functioning, somehow.   Our bodies can’t assimilate chemicals – it is foreign to the body and it spends it’s resources trying to eliminate these foreign substances – taking away its energy in pitiable activity when it has much more important things to do.  We never died for lack of chemicals, be we die slowly every day from lack of wholesome, natural food which the body does recognize.  That is the way nature designed this whole thing and we would be wise to start heeding the evidence.   I don’t know about all the supplements ( I take some).  I have dealt with a number of fine doctors and their newsletters over time, but they generally lose me when even tho their information is good, the sale of product dominates the whole thing.   

I kind of feel if we could just eat wholesome, fresh stuff  (not  canned , packaged or boxed anything, we’d be so much better off. . . health wise.    Even those autistic kids.  There’s    a great movements around – have to be willing to find them.  People are making progress with little things.   Big doses of Vitamin D-3;  wonderful smoothies made with some fresh greens and raw fruit, clean water – you’d be amazed what all you can put in a blender and those kids absolutely love it.  Have many on this blog (but you gotta look for them) . . ah, well,   got carried away again. . . Jan)

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