PHILADELPHIA, May 7, 2008
Genetic Mapping More Hype Than Help?
Looking Behind The Cost And Business Of Mapping Your DNA Destiny
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Julian Awad founded Smart Genetics after having a family history of Alzheimer's. (CBS)
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But he has always worried that the Alzheimer's Disease that brought down his grandfather and uncle might be lurking in his genes too, CBS News transportation and consumer safety correspondent Nancy Cordes reports.
"It takes a huge toll on a family taking care of someone like that who really can't take care of themselves, both financially and emotionally," Awad said.
That's why he plans to be the first customer of a new company called Smart Genetics. In fact, it's a company Awad himself started. It can tell you, with a saliva sample, which form of a gene called "APOE" you've inherited.
The most common form is thought to indicate an average risk of Alzheimers. Another form may protect against it, and a third can indicate a risk three to 15 times higher than average. It's the first time such a test is being marketed to consumers - at $399 a pop.
"I think you can take a room and 50 percent of the room saying 'I don't want to know' and 50 percent of the room saying 'I absolutely want to know,'" Awad said. "I am one of those people."
His is one of three dozen companies now in the business of predicting your potential genetic risk for everything from heart disease and diabetes to prostate cancer. Navigenics will give you a personalized DNA profile, explained by a genetic counselor for $2,500. 23andMe and Decode Genetics advertise their own versions.
But some experts feel the industry promises more than science can currently deliver, because many genes are poor predictors of whether or not you'll actually get a disease. Lifestyle and environmental factors also play a major role.
"There is a bit of a wild wild west going on in terms of some of the DNA testing that's out there," said Dr. Francis Collins, director of the National Human Genome Research Institute. "Some of it is done by reputable companies, but there are some that are even unscrupulous, who will offer you tests or DNA variations that frankly you're not sure what they mean at all."
In California, 12 complaints have been filed related to the cost and effectiveness of DNA testing companies. In New York, the Department of Health has sent letters to companies as well.
Dr. Robert Green has been studying that exact question for nine years. He says people do seem to benefit from the knowledge.
"Sometimes, they will actually do things they hope will reduce their risk of Alzheimer's disease, like taking vitamins and doing more exercise," Green said.
That's Awad's intention, if he finds out he's at increased risk. He let CBS News watch as he received his results from a genetic counselor over the phone - the same way his customers will get the news, though privately of course, and not given to insurance companies.
Over the phone, a counselor said, "Julian, I have good news for you."
"Ok, wow," Awad said.
"Your lifetime risk is about 9 or 10 percent compared to the general population risk of 15," the counselor said.
"Well, I didn't expect that at all!" Awad said.
"So does this mean that all your plans for healthy living go out the window?" Cordes asked.
"No, definitely not it doesn't tell me that I am not going to get Alzheimer's disease, it just tells me I am going to have a lower risk," he said. "So I want all those things just in case overall to reduce my risk even further."
Some might see it as false security. He sees it as peace of mind.
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- The profit driven Medical Industry is built around controlling symptoms, Prevention is not in their agenda.
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