Feb 162014
 

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Late last year there was a lot of hub bub over the issue regarding the FDA deciding to try to regulate interpretations of physiological data gained from genetic testing.
Specifically, the FDA attacked company 23andMe for offering low-cost, direct-to-consumer (via online data to you) genetic tests and interpretations for several thousand gene SNPs. (SNPs, pronounced “snips”, are our little weirdnesses or uniquenesses that make us special, but not too special. To be a SNP rather than a genetic anomaly, at least 1% of the population must share it.)
The FDA claimed the results are “medical data” and should be tested for and discussed with a doctor. I believe that’s a load of malarchy stemming from lobbying by insurance companies and the medical field. This is the Age of Information, and now anyone can know everything. You can figure out how to perform heart surgery on YouTube (for the record, please don’t), and that intimidates a lot of people. The fact is, DNA is not a medical condition; it is you. We all have it, we own it.
Think of it this way: if you were blind, and paid someone to tell you what color hair you have, is that really medical data? Does an organization long-known for outdated, unethical standards and decisions, as well as caving in to big pharma lobbyist efforts, really in a position to decide what you can and cannot know about your own body?
Plus, we are finding out more and more that DNA can be changed. Yes, it is you, the essense of you, but, it can change. Got that? The study of epigenetics and genetic therapies are a testament to this. So whether you think you want to plan a designer baby or you fear you carry a genetic dis-ease, it doesn’t have to be a death sentence. It really is going to come down to a new culture of ethics: helping those that need it, and not tampering with what ain’t broke.
What the FDA claims is that they fear people are going to take these $99 test interpretations seriously and act rashly.
For example, a big benefit of this test is that it tests for a number of BCRA genes, the same that Angelina Jolie had. However, the FDA is worried tgat if a person carries one or more of the nine SNPs linked to breast cancer, they might precede in taking the same action…but how, or by who, without medical advice? And couldn’t that be lifesaving anyways? And whose business is it what a person chooses for their body? Not some big government organization, I’d agree. I would I think more likely, a person would waste no time in bringing their results to a doctor to discuss further.
What is ironic is that many doctors would never randomly test for these genes in the first place, (its not yet routine) unless pressed AND if the person is a female AND has a family history with at least more than one person afflicted with breast cancer. And for $99 and a little initiative on your part, this new technology, this new availability of information could be saving your life and have the power to enlighten, perhaps, your offspring or other family who may carry the gene so they can be proactive. That is probably the most important heatwrenching examples. But, the FDA, claiming our “best interests”, put a stop to that, at least commercially.
Should the FDA outlaw psychics, too? Because although this genetc data is in us, and can be interpreted, there is so much we don’t know or understand about the results. I think making this type of information available to the educated, healthful-minded, positive initiative-taking customers of direct-to-consumer DNA tests is another step closer to preventative health.
Luckily, with 23andMe as well as a few other ancestry-related companies, you get a file of your raw data. And with that, and a $10 donation, open source community project Promethease will compare your raw results to thousands of published research journal articles to provide you with essentially the same enlightening information.
I submitted my spit to 23andMe, then uploaded my raw data to Promethease, and it was one of the coolest, most important things I have ever done. I found it motivated me to take better care of my health through diet and exercise. For example, my data revealed that I may have an increased risk of stomach problems like bleeding from taking NSAIDs. So before I pop a Tylenol, I will instead hydrate with some good old water and try some pressure point therapy instead.
I believe the more you know, the better your decisions will be, and the higher your quality of life will be. I highly recommend researching whether genetic testing is something you’re interested in, and if so, taking the next step.

 Posted by on February 16, 2014 at 7:15 am Uncategorized

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