Friday, August 9, 2019

Retrospective #174: 23andMe and the Self-Care Brouhaha

According to a November 2013 Washington Post story, the FDA ordered 23andMe to stop marketing its genetic diagnosis kit. 23andMe claimed to be able to identify 254 conditions based on a biological sample (a cheek swab). The FDA says that a false negative or a false positive could “mislead consumers and could unwisely convince them to self-treat, with potentially deadly results.” Damn! So, we must be content with the information our government has approved and that the health care establishment has dispensed, with government’s approval? No way, Jose!
Where does one begin to tear this thinking apart? Let’s address the conspiracy theories first. Who brought the complaint about this company’s product to the FDA’s attention? According to one commenter on the Post’s website, who provided a link to Bloomberg News, it was UnitedHealth Group, “the US’s #1 publicly traded insurer.”  To which another commenter replied, “Isn’t the unfettered free market great? To which the original commenter replied, “And now UHG can require patients to use its own in-network Premium Kit, developed by a ‘trusted partner,’ that does less accurate testing for 10 times the price. These savings all brought to you by the FDA.”
Another conspiracy theorist speculates, “Looks like Sergey Brin is using his buddy Obama to exact revenge on his estranged wife, Anne Wojcicki,” to which yet another replies, “Did the Google husband withdraw support from his divorcing wife?” Backstory:  Brin is a co-founder, with Larry Page, of Google, and was worth (in 2013) about $25 billion. His wife, who is divorcing him for his dalliances, is co-founder and chief executive of 23andMe.
According to Wikipedia, Brin’s mother was diagnosed with Parkinson’s in 2008. Brin used 23andMe to find out that he has “a 20 to 80% chance of developing Parkinson’s later in life.” When asked whether ignorance was not bliss in such matters, he stated that his knowledge means that he can now take measures to ward off the disease. An editorial, “Enlightenment Man,” in the print edition of The Economist magazine states that, "Mr. Brin regards his mutation of LRRK2 as a bug in his personal code, and thus as no different from the bugs in computer code that Google’s engineers fix every day. By helping himself, he can therefore help others as well. He considers himself lucky.  But there’s a much bigger point. Isn’t knowledge always good, and certainly always better than ignorance?”
Anyway, my interest in this subject relates to free enterprise, individual liberty and the frontiers of science – not juicy gossip or political intrigue. I have been urging readers to “take charge of their own health” in part as an act of individual responsibility, in part to preserve personal liberty, and in part as a reaction to the horrible dietary advice that our government has been dispensing through its own agencies. Government has enormous control over the private sector. It acts through the medical establishment by way of “research” funding and regulatory approvals. This in turn influences clinical practice and dietary practices in institutions and for private citizens.
And then, on the individual liberty front, one commenter complains, “It’s really sickening we’ve reached the point where the state wants to regulate one’s own ability to access information ABOUT ONESELF…never mind that they want access to and control over all information ABOUT you.” Another sarcastically put it this way: “This is just the government looking out for us. It’s far better that the health agency has more information about me than I do.” “Thank you, President Obama,” he says, “for putting a stop to my entering willingly into an agreement with a private company. Their research and data could undermine federal initiatives that would be unacceptable.” To put a fine point on it, another says, “Deciding whether I can buy a genetic test to analyze my genome and what I do with it is a place in which the government should have no role.”
Agribusiness and Big Pharma are both happy with this arrangement though. They just develop, manufacture and market products to comply with the government’s “healthy diet,” which is the one making us fat and sick. So, it wouldn’t surprise me that UnitedHealth Group wants to maintain its control of their leading position in the market.
It’s too bad, though. Knowledge IS good, and better than ignorance. I hope that after the divorce in finalized, Ann takes the FDA to court. That way both she and we will be free. NB: It turns out, she did, and 23andME is back.

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