INTRO: The first human genome was sequenced in 2003 – it took years and cost over 3 billion dollars. Today, several commercial companies are poised to analyze an abbreviated version of your genetic code for as little as a few hundred dollars. ideastream® health and science reporter Gretchen Cuda spoke to two of them last week at Cleveland’s Medical Innovation Summit.
CUDA: These days you can order pretty much anything on the internet. Even a copy of your genome – well parts of it anyway. Anne Wojcicki is co-founder of 23andMe, a 2-year old company headquartered in Mountain View California that aims to make genetics as popular as facebook.
WOJCICKI: You go online you order a kit – it costs 399 dollars --you get a little vial, you spit in the vial, you send it back through the mail and then 2-4 weeks later you actually get an email saying “your genome has arrived.”
CUDA: After logging into the secure website – voila – your very own genome. But what on earth are you going to do with that? Wojcicki says a lot – for example the company will tell you your risk for more than 100 different diseases and conditions like heart attacks, arthritis and cancers, or if you’re a carrier for things like cystic fibrosis. In addition to providing information about yourself – 23 and me wants to know something about you too --Wojcicki says that clients are asked to fill out a number of surveys that ask all sorts of questions -- things like …
WOJCICKI : … when you take Benadryl do you get sleepy , do you get hyper –--things like when you see bright sunlight do you sneeze – and actually there is about 20 to30 percent of the population that when they see bright sunlight they sneeze
CUDA: Wojcicki says they’re looking for a genetic basis to questions like why some people sneeze in bright sunlight, or think cilantro is delicious and others think it tastes like soap. . The hook is that it’s fun she says; people are inherently curious about themselves and how they compare to others - but Wojcicki also believes this information gathering can lead to discoveries about serious conditions like Alzheimer’s or Parkinson’s disease.
23andMe isn’t the only commercial genetics company on the block. A company called Navigenics, also in California, is doing virtually the same thing. Dietrich Stephan is co-founder. He says when his company got started a couple of years ago it charged 25 hundred dollars for its services. Today they’re starting package is 400 dollars. Stephan’s selling point is prevention - by allowing people to have an assessment of their risk for various diseases, they can take action to be healthier
STEPHAN: For example, I’m at extremely high risk for prostate cancer, I’m in the top 5th percentile of risk based on my genes for prostate cancer – and now I know that I should go in for earlier screening, perhaps earlier than the classically recommended age of 50, that I should watch my PSA levels .
CUDA: And Stephan says that if everybody did that –in time – it might change the way medicine is practiced. In fact, it might even have the power to change the whole health care system
STEPHAN: We actually believe Navigenics is the lynch pin to flipping the whole health care system from reactive and generalized to personalized and proactive.
CUDA: The sort of personalized medicine Stephan is referring to is what many scientists hold up as the wave of the future – drugs and treatments tailored to an individual because of his or her genes. Much of today’s medicine is based on studies of outcomes of large numbers of people; treatment that to a degree is a kind of generalized conclusion Edward McCabe is president of the American society for human genetics and a professor at UCLA school of Medicine – he believes the ability to be far more precise in knowing what works for a particular individual is right around the corner.
MCCABE: We’re now to the point where we’ll be able to say, is there 2% of the population that should not take this drug. But it’s and outstanding drug for the other 98%. And we won’t just know that there are 2 percent --we will know who those 2% are.
CUDA: Still some scientists suggest caution is in order. Dr. Rudolph Tanzi studies the genetics of Alzheimer’s disease at Harvard. He says that selling genetic services directly to consumers does have some merits –but he worries that the science isn’t quite there yet.
TANZI: I think it’s dangerous to eat a meal when it’s not cooked.
CUDA: So are you comparing this to an uncooked meal?
TANZI: Absolutely. This is raw meat.
CUDA: Tanzi argues that the science behind assigning a definitive information to individuals about their particular health risks is still imprecise and prone to misinterpretation. Many leading scientists agree with him. This week a paper in the journal Nature compared the results of Navigenics and 23andMe for five individuals. They found that for seven different diseases they agreed less than half the time. Evidence to Tanzi and others that companies in the business of selling this information to consumers need to be very circumspect in the way they present the facts.
TANZI: You have to do this in a medically responsible way. You need to be very, very honest with incredible caveats and limitations – and the information should be delivered in such a way that doesn’t indicate hard science or numbers – because we’re not there yet.
CUDA: Another caveat is privacy. Recent federal legislation prevents your genetic information from being used to deny an individual health insurance or a job but it doesn’t protect discrimination by life insurance companies or long term care – and the new protections haven’t been tested in the courts yet. If you share it with your doctor –as both companies selling genome sequencing suggest you should – it’s likely to become part of your medical record – and then insurance companies automatically have access to it. Harvard’s Rudolph Tanzi says that’s too big a risk for him – and he’s in the field.
TANZI : Until the amendment “cannot discriminate according to race color and creed” changes to “cannot discriminate according to race, color, creed and DNA sequence,” I wouldn’t want to have my DNA sequenced anywhere.
CUDA: But 23 and me is betting that today’s Facebook generation isn’t concerned with privacy at all. Their service includes a social networking component for those who ready to share and compare…not just with their doctor but on the internet. And one final footnote to this story - The future may be written right here in Northeast Ohio. Both 23 and me and Navigenics are discussing a research partnership with the Cleveland Clinic. Gretchen Cuda, 90.3