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Health

Your genes, your rights - FDA's Jeffrey Shuren misleading testimony under oath

Gene ExpressionBy Razib KhanMarch 9, 2011 11:05 PM

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Over the past few days I've been very disturbed...and angry. The reason is that I've been reading Misha Angrist and Dr. Daniel MacArthur. First, watch this video:

In the very near future you may be forced to go through a "professional" to get access to your genetic information. Professionals who will be well paid to "interpret" a complex morass of statistical data which they barely comprehend.

Let's be real here: someone who regularly reads this blog (or Dr. Daniel MacArthur or Misha's blog) knows much more about genomics than 99% of medical doctors. And yet someone reading this blog does not have the guild certification in the eyes of the government to "appropriately" understand their own genetic information. Someone reading this blog will have to pay, either out of pocket, or through insurance, someone else for access to

their own information.

Let me repeat: the government and professional guilds which exist to defend the financial interests of their members are proposing that they arbitrate what you can know about

your genome.

A friend with a background in genomics emailed me today: "If they succeed in ramming this through, then you will not be able to access your own damn genome without a doctor standing over your shoulder." That is my fear. Is it your fear? Do you care? In the medium term this is all irrelevant. Sequencing will be so cheap that it will be impossible for the government and well-connected self-interested parties to prevent you from gaining access to your own genetic information. Until then, they will slow progress and the potential utility of this business. Additionally, this sector

will flee the United States and go offshore, where regulatory regimes are not so strict.

BGI should give glowing letters of thanks to Jeffrey Shuren and the A.M.A.! This is a power play where big organizations, the government, corporations, and professional guilds, are attempting to squelch the freedom of the consumer to further their own interests, and also strangle a nascent economic sector of start-ups as a side effect. You are so much more than your genes. So much more than that 3 billion base pairs.

But they are a start, a beginning, and how dare the government question your right to know the basic genetic building blocks of who you are.

This is the same government which attempted to construct a database of genetic information on foreign leaders. We know very well then who they think should have access to this data. The Very Serious People with a great deal of Power. People with "clearance," and "expertise," have a right to know more about your own DNA sequence than you do. What can you do? What can we do? Can we affect change? I don't know, I can't predict the future. But this is what I'm going to do. 1) I am going to release my own 23andMe sequence into the public domain soon. I encourage everyone to download it. I would rather have someone off the street know my own genetic information than be made invisible by the government. That is my right. For now that right is not barred by law. I will exercise it. 2) Spread word of this video via social networking websites and twitter. The media needs to get the word out, but they only will if they know you care. Do you care? I hope you do.

This is a power grab, this is not about safety or ethics.

If it was, I assume that the "interpretative services" would be provided for free. I doubt they will be. 3) Contact your local representative in congress. I've never done this myself, but am going to draft a quick note. They need to be aware that people care, that this isn't just a minor regulatory issue. 4) The online community needs to get organized. We're not as powerful as a million doctors and a Leviathan government,

but we have right on our side.

They're trying to take from us what is ours. 5) Plan B's. We need to prepare for the worst. Which nations have the least onerous regulatory regimes? Is genomic tourism going to be necessary? How about DIYgenomics? The cost of the technology to genotype and sequence is going to crash. I know that the Los Angeles DIYbio group has a cheap cast-off sequencer. For those who can't afford to go abroad soon we'll be able to get access to our information in our homes. Let's prepare for that day. This is a call to arms, a start. I've been complacent about this issue, focusing more on the fascinating aspects of ancestry inference which are enabled by personal genomics. No more. I'll be doing a lot of reading today. If you have a blog, post the video. Raise awareness. Let's make our voices heard. If they take away our rights because we're silent, we have only ourselves to blame. If they take aware our rights despite our efforts, we'll set up the infrastructure for the day when we can take back what is ours. P.S. Feel free to post info and ideas in the comments. I just literally woke up to the urgency of this issue in the past 48 hours.Update: here is Jeffrey Shuren's email address: jeff.shuren@fda.hhs.gov.

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