Category Archives: The Nanny State

I Want My — I Want My — I Want My DNA

Today the FDA dropped a big m-fing hammer on 23andme, a service that will allow you some insight into your own genome. They offer, along with the ability to get a raw report about the specific genes they track, some level of analysis of your genome. They can use your data to look for specific known genetic markers of inherited conditions, and giving you advance warning that you may be at elevated risk of certain problems. In addition, by trying to build a large database of genetic data, they are vastly accelerating the degree to which future genetic markers can be understood for analysis.

This, according to the FDA, is data used for diagnostic and prevention purposes, and therefore makes 23andme a “Medical Device”. Suffice to say that medical devices must to be FDA approved, according to the law, and 23andme hasn’t completed all the hoops necessary to allow me to spit in a cup and send it to a lab. So they can’t sell their kits any longer.

This puts some people, like my wife and myself, in a bit of a strange position.

As many of you know, our 4yo son is autistic. We’ve been through quite a bit to potentially understand the causes of his autism. Without getting too deep into the matter (there are many possible causes, each with its own camp of die-hard adherent believers, all of whom hate each other*), one of the avenues we’ve been traveling down is testing for various types of biomedical dysregulation. As a result, we’ve found that he has a genetic mutation common in a lot of autistic individuals related to what is called the “methylation pathway”. This is a biologic process related to brain activity and development, so the fact that it’s short-circuited gives some indication of where things can be helped**.

So my wife and I are taking this as a chance to better understand more about our own genetic profiles, and with the added benefit of determining more clearly where my son’s genetic mutations have come from***. So we both did the “spit in a tube” thing last week, and our samples are happily on their way to 23andme.

Now, I’m smart enough to know that genetics is NOT an exact science. That getting a report that there might be elevated risk for X doesn’t mean I have X****. I’m not going to use the information to make rash decisions about my medical care.

But it’s a start. It’s information that I don’t have today. It’s information that may be of immeasurable benefit to me in the near term and down the road, if it reveals something real. And it’s information that the FDA doesn’t trust me to have.

“Trust” is the term there. The FDA doesn’t trust us mere citizens. It doesn’t believe we’re capable of making decisions that affect our very lives. The 23andme genetic information isn’t perfect, but they believe that if we can’t get perfect information, we’re better off with no information. This information, of course, is getting better. One of the possible advantages of a widening circle of people partaking in 23andme research is that they can improve their ability to analyze a sample, looking for correlations years from now based on the sample I just gave. Part of the reason I wanted to do this was based upon expected future benefit in addition to learning about the aspects of my genetic that already relate to known markers.

So, our saliva is on the way. With the FDA’s recent proclamation, does that mean that 23andme will complete the testing on our samples? Or will the brakes be put on before they’re allowed to run the test? Will this action end up killing the company, so that even if I *do* get my results today there will never be any future research to make the findings more valuable to me?

So thanks a lot, FDA. You’re making me wonder if I’ll ever get the information I absolutely want and paid for. You’re making the future value of that investment lower, by putting into question the future of 23andme and the amount of data they have access to to analyze. And by doing so, you’re probably putting the brakes on the speed at which future genetic breakthroughs will manifest by artificially culling the data set. Nobody will know how many people will die in the future as a result of slower progress in the growing field of genetic research, but they won’t thank you, nor will I, for protecting me from this information today.

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Bye Bye 4th and 5th amendment: Obamacare info may be used for Law Enforcement and Audit activities

Well… we knew that the 4th and 5th amendment meant nothing to them… never mind HIPAA… but really?

 

Obamacare Marketplace: Personal Data Can Be Used For ‘Law Enforcement and Audit Activities’

Maryland’s Health Connection, the state’s Obamacare marketplace, has been plagued by delays in the first days of open enrollment. If users are able to endure long page-loading delays, they are presented with the website’s privacy policy, a ubiquitous fine-print feature on websites that often go unread. Nevertheless, users are asked to check off a box that they agree to the terms.

The policy contains many standard statements about information automatically collected regarding Internet browsers and IP addresses, temporary “cookies” used by the site, and website accessibility. However, at least two conditions may give some users pause before proceeding.

The first is regarding personal information submitted with an application for those users who follow through on the sign up process all the way to the end. The policy states that all information to help in applying for coverage and even for making a payment will be kept strictly confidential and only be used to carry out the function of the marketplace. There is, however, an exception: “[W]e may share information provided in your application with the appropriate authorities for law enforcement and audit activities.” Here is the entire paragraph from the policy the includes the exception [emphasis added]:

Should you decide to apply for health coverage through Maryland Health Connection, the information you supply in your application will be used to determine whether you are eligible for health and dental coverage offered through Maryland Health Connection and for insurance affordability programs. It also may be used to assist you in making a payment for the insurance plan you select, and for related automated reminders or other activities permitted by law. We will preserve the privacy of personal records and protect confidential or privileged information in full accordance with federal and State law. We will not sell your information to others. Any information that you provide to us in your application will be used only to carry out the functions of Maryland Health Connection. The only exception to this policy is that we may share information provided in your application with the appropriate authorities for law enforcement and audit activities.

The site does not specify if “appropriate authorities” refers only to state authorities or if it could include the federal government, as well. Neither is there any detail on what type of law enforcement and/or audit activities would justify the release of the personal information, or who exactly is authorized to make such a determination. An email to the Maryland Health Connection’s media contact seeking clarification has not yet been answered

The second privacy term that may prompt caution by users relates to email communications. The policy reads:

If you send us an e-mail, we use the information you send us to respond to your inquiry. E-mail correspondence may become a public record. As a public record, your correspondence could be disclosed to other parties upon their request in accordance with Maryland’s Public Information Act.

Since emails to the marketplace could conceivably involve private matters regarding finances, health history, and other sensitive issues, the fact that such information could be made part of the “public record” could prevent users from being as free with their information than they might otherwise be. However, as noted, any requests for such emails would still be subject to Maryland’s Public Information Act which contains certain exceptions to the disclosure rules.

Read the fine print eh?

 These are such clear 4th and 5th amendment violations I can’t believe anyone didn’t immediately say “uh guys… we cant actually do this”…

… but as I said, we know that our elected and selected “lords and masters” don’t give a damn about the 4th or 5th amendments (or really any of the others ones any time they become inconvenient).

So while I’m sure they were told they couldn’t do it, I’m sure they said “ahh well the disclaimer and release is enough, we’ll be fine”.

 Yeah no.

 And as far as HIPAA goes… In reality these terms of use are not anywhere near an adequate HIPAA disclosure release, so using any of this data in any manner other than for healthcare purposes would be a federal offense.

I am a cynically romantic optimistic pessimist. I am neither liberal, nor conservative. I am a (somewhat disgruntled) muscular minarchist… something like a constructive anarchist.

Basically what that means, is that I believe, all things being equal, responsible adults should be able to do whatever the hell they want to do, so long as nobody’s getting hurt, who isn’t paying extra

The problem with mobile Amber Alerts

As you might have heard, many Californians were awakened by their phones last week for a late-night Amber Alert:

Russ went to bed early, setting “do not disturb” mode on his iPhone so no one could wake him up. His phone did wake him up, though, screeching and lighting up with an Amber Alert message about abducted children in a different part of the state. He asked Consumerist: how can he make these unwanted text messages stop?

What Russ got wasn’t a text message. It was part of the Wireless Emergency Alert System, or WEA. That’s a Federal Communications Commission program that zaps alerts about man-made or natural disasters, urgent messages from the President, and Amber Alerts directly to your phone.

Russ’ case was typical. That’s the problem. Amber alerts do not represent life-and-limb emergencies for 99.999% of those who receive them. Yet, thanks to the requirement of all WEA messages to be accompanied by the distinctive Emergency Broadcast System tone, they are treated as such.

Predictably, the noise and disruption caused by this late-night alert sent a lot of folks (myself included) scurrying to turn it off. California officials warn against this:

[T]he tones that come along with [Amber Alerts] are disruptive and annoying.

They’re supposed to be – to wake you up and make you pay attention and law enforcement officers statewide are urging cell users to stay in this potentially life-saving loop.

“That individual who may have deactivated may have provided that info on an individual that we’re looking for. Put yourself in those cases as well and put it into perspective,” Quintero said.

Speaker of the Assembly John Perez is so concerned about possible mass alert deactivations that he’s calling for a legislative hearing on the matter.

He also plans to arrange funding for a campaign of public service announcements emphasizing the importance of the alert system.

The public service announcements will do absolutely nothing to solve the problem. They might get a few people to turn the alerts back on, but those same folks will end up turning them off again with the next Amber Alert. Personally, I’m not going to budge. As a musician and a software professional, I need to have absolute trust in the Vibrate Only and Do Not Disturb settings on my smartphone. The Amber Alert I received caused my phone to emit a noise on maximum volume despite my setting it to Vibrate Only.

After this happened, I carefully examined the Emergency Alert settings on my device and found that there is no way to leave these on without the sound. That lack of choice is unfortunate. I would have been perfectly happy receiving Amber Alerts that displayed like other push notifications. I know at least a dozen other people who feel the same way. Judging by the news, there are probably hundreds of thousands more in the state. Each and every one of us will never get another Amber Alert on our phone because our only choices were to tolerate the noisy disruptions or opt out entirely. Guess we’ll just have to get our Amber Alerts from those signs on the highways.

Reason’s Mike Riggs Interviews Radley Balko on Police Militarization

It’s been nearly a month since Radley Balko’s latest book Rise of the Warrior Cop: The Militarization of America’s Police Forces was released. Now Balko is making the rounds with the various media outlets about this subject which normally receives very little attention by the media. As one would expect, Balko has more than his share of critics particularly from the cops-can-do-no-wrong crowd but there has also been a quite positive response by at least some members of law enforcement (particularly former cops who began their careers prior to the SWAT era).

In the video below, Reason’s Mike Riggs interviews the author.

(Note: Link above is taken from Reason‘s site, so if you click through and buy it from Amazon via that link, a portion of the proceeds go to Reason Magazine.)

Embrace Burke? No thanks, Mr. Dionne. I’ll take Coolidge instead.

In his never-ending campaign to weaken those who oppose a progressive state, E.J. Dionne has attempted to give American Conservatives (including, in his flawed formulation, libertarians) a new idol: Edmund Burke. Embracing Burke, Dionne posits, would “clip the wings of modern conservatives”:

It’s to Norman’s credit that he recognizes how “Burke also clips the wings of many contemporary conservatives.” While he “helped establish modern conceptions of nationhood and national allegiance,” he “rejected military adventures.” He “celebrated religious observance, but despised moral absolutism.”

Norman also sees Burke as implicitly offering “a profound critique of the market fundamentalism now prevalent in Western society.” He thinks that Burke would “note the extraordinary greed and self-dealing seen over the past decade by the modern nabobs of banking and finance in a series of cartels disguised as markets.” And a Burkean conservatism would be wary of any ideology that “causes people to lose sight of the real social sources of human well-being and to become more selfish and individualistic, by priming them with ideas of financial success and celebrity.”

The second paragraph is built on an entirely faulty assumption. It is simply beyond question that the FHA and its’ regulated GSEs were the key enabler of the housing bubble of the last decade in the US. These New Deal programs socialized the risk of mortgages while allowing private players to reap the profits. True market fundamentalists always railed against these distortions of markets. It is advocates of big government, such as Dionne himself, who are to blame for the situation.

Even without the factual error, Dionne’s quote from Norman on Burke’s belief is wrought with other problems. It requires one to believe that greed is linked to individualism and ignore the parade of collectivists who sought to use the machinery of Washington to exploit others for the own gain. (Sadly, too many people actually believe this, but that’s another story for another time.) It requires one to believe that conservatives care deeply about celebrity as a part of a core ideology. Dionne perhaps missed the right’s revulsion to the concept of Barack Obama as a savior and a light worker. Or maybe he didn’t and just assumed it was a symptom of bitter clinging. In any case, he overlooks the fact that the left has a monopoly on personalizing politics in this country.

Now that we have established that Dionne’s understanding of a conservative is already tenuous, at best, let’s read his vision of a model Burkean Conservative:

Burke’s conservatism was based on a proper understanding of that word. He believed in preserving the social order and respecting old habits. He persistently warned against the destructive character of radical change. He was wary of ideology and grand ideas, rejecting, as Norman puts it, “universal claims divorced from an actual social context.” Burke saw the well-ordered society as a “partnership of the dead, the living and the yet to be born,” a nice formula for a forward-looking traditionalism — and not a bad slogan for environmentalists.

Here, Dionne unwittingly uncovers a truth. Given that the modern social order in the US is built upon the legacy of the progressives and the New Deal, to be a Burkean conservative is to be a mainstream progressive. Libertarians are seen as radicals precisely because we want a social order that dispenses with the New Deal and its legacy. Meanwhile, modern Republicans play to shape a conservative social agenda using the rules and mechanisms put in place by the New Deal. Even the Constitution, the contract between the dead, the living, and the yet to be born in the United States, is interpreted through the ideology of the New Dealers.

This insight brings us to the most laughable of Dionne’s assertions:

Conservatism will flounder unless it remembers the imperative of addressing the interests of the many, not the few.

Progressives have never done anything but address the needs of the few. Which few and to what degree are always in question. The need for an underclass of highly productive but exploitable people is not. This underclass was referred to by William Graham Sumner as “The Forgotten Man”:

It is when we come to the proposed measures of relief for the evils which have caught public attention that we reach the real subject which deserves our attention. As soon as A observes something which seems to him to be wrong, from which X is suffering, A talks it over with B, and A and B then propose to get a law passed to remedy the evil and help X. Their law always proposes to determine what C shall do for X or, in the better case, what A, B and C shall do for X. As for A and B, who get a law to make themselves do for X what they are willing to do for him, we have nothing to say except that they might better have done it without any law, but what I want to do is to look up C. I want to show you what manner of man he is. I call him the Forgotten Man. Perhaps the appellation is not strictly correct. He is the man who never is thought of. He is the victim of the reformer, social speculator and philanthropist, and I hope to show you before I get through that he deserves your notice both for his character and for the many burdens which are laid upon him.

Sumner’s appellation notwithstanding, members of this productive underclass are not forgotten by progressives. On the contrary, they are known to be a vital component of any progressive plan for society. In the Affordable Care Act, for example, they are the young and healthy who must be conscripted into the health insurance market so that their premiums might benefit the old and sick. In Social Security, they are the workers who pay taxes in so that retirees may get benefits. In Affirmative Action, they are the whites and Asians who lose opportunities granted to other minorities on the basis of skin color.

For decades, progressives maintained the illusion that it was only a demonized few who bore the brunt of this exploitation. Franklin Delano Roosevelt used his political acumen to identify groups for benefit or demonization. He went so far in this endeavor as to hire photographers and writers to produce propaganda about those who benefited while launching vicious legal battles against innocent men just because they were in a group targeted for demonization. (This does have a familiar ring, doesn’t it?)

However, that illusion has cracked in recent years. Eventually, millions of members of the productive underclass realized exactly what was going on. So born was the Tea Party, a so-called conservative movement. Distressingly for Dionne, this movement is far from the conservatism Burke preached and Dionne practices daily. It is radical, seeking to smash a social order built upon exploiting its members for the benefit of others.

The radical nature of the Tea Party prompted fear among the establishment. Both major parties in America are essentially progressive in mechanics, if not agenda. The angry, dismissive reaction from the Republicans and the downright punitive reaction from the Democrats highlighted how radical the idea of declaring one “taxed enough already” truly is. Since the Wilson administration, Washington has decided who was taxed enough already and who could pay more.

The Tea Party, for all the good it has done in revealing the corruption in Washington (much through its own victimhood at the hands of the IRS), is still a movement lacking a positive idea. It is essentially a movement pushing for a cessation of activity. This will cause many to ask what shall be done instead. The Tea Party has no answer for this.

Neither, it seems, do most libertarians. We tend to focus on the “no” too often as well. Government should stop doing this and not start doing that. We’re seen as a force of negativity. Unfortunately, in a world where we are opposed to both major parties and the mainstream media apparatus designed to enforce the status quo, negativity doesn’t sell.

Respect and stability, however, do. Enter Calvin Coolidge. The concept of normalcy embraced by Harding and Coolidge is both simple and elegant. Here is a description of the concept by Amity Shlaes in an interview with Ed Driscoll:

Ed, what did you learn normalcy was in school? I learned it was something kind of dull, right? Like the — normalcy doesn’t sound elevated or wonderful and that was the Harding motto.

But what they meant by normalcy is not we should all be normal and cogs. Right? What they meant is the environment should be normal so that we can have fun and play with new ideas, which is something very different. Predictability, the reduction of uncertainty. Coolidge as a candidate even used the phrase “uncertainty” which you hear so much today and which is also the subject of Forgotten Man. It’s less uncertainty, please. He really — it’s a theme all the way to the end of his life. You can find it in his columns post-presidency. He spoke of uncertainty.

If you’re reading this, you’re taking advantage of Coolidge’s concept of normalcy in a very different context. The internet is built on normalcy. Packets are packets, traffic is traffic, and different application protocols expect lower-level protocols to act as specified at all times. The creation built upon these simple ideas, upon normalcy, is easily humanity’s largest by a vast margin. Yet there is no edifice called “The Internet”, no building that makes it all work. It is a distributed network of components all playing by the same rules.*

So it was with the American economy under Coolidge. After a decade of tumult resulting from progressive leadership, the US economy got eight blessed years of normalcy. With this diminished uncertainty, companies were free to invest. The economy boomed and even the poor man was better off in 1928 than in 1920.

Then, in response to the crash of 1929, a round of “bold experiments” (to borrow FDR’s phrase) were undertaken upon the economy by Hoover, Roosevelt, and the Congresses of the era for the next decade and a half. These experiments caused untold economic devastation by distorting markets, increasing uncertainty, and causing those who had capital to hoard and protect it, eventually causing Roosevelt to pursue an undistributed profits tax to shake this capital loose from unwilling businesses. Even during the Second World War, while the US was not statistically in a depression, the standard of living was still poor in comparison to the normalcy of the 1920s.

The experiments, in every empirical sense, were a failure. But with the help of writers like Arthur Schlesinger, Jr. (who Dionne quotes approvingly as an admirer of Burke), these failures were pawned off on the American people as successes and the role that predictability and normalcy play in prosperity forgotten.

Today, we face an economic crisis built upon government interventions into and distortions of the private economy. Despite the Obama administration focusing on jobs, there has been no improvement for the millions who have been chronically unemployed for years. The Democrats’ bold experiment with banking, the Dodd-Frank law, has driven the poor away from banks as they killed off free services. The Democrats’ bold experiment with health care is already driving up costs for millions while making full-time jobs hard to come by for hourly workers. Look at any problem in the US economy today and at its root you will find a bold experiment from Washington, D.C.

The message I have for all Americans is to ignore Dionne (good advice in any case) and his plea to embrace Burke. It’s time to embrace Coolidge and pursue a course of radical normalcy.
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*For those who don’t remember, one of the major arguments against SOPA and PIPA were that they legislated a change in the architecture of the internet that broke the DNS protocol. This endangered the functioning of the entire network by disrupting the rules upon which countless other technologies depended. A perfect illustration of the need for normalcy in a complex, distributed system.
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