Tuesday, July 28, 2015
Is it possible for us to unbite the proverbial apple? Is it possible for us to revert to naked grazing among the magnificent bounty offered by the new gods, completely oblivious to benevolent surveillance and unobtrusive discipline? Our government thinks so. The billionaire class thinks so. And many of us agree and think it’s for the best. After all, honest people have nothing to hide, nothing to be ashamed of, and privacy has no tangible benefits anyway. Better yet, a little less privacy, and a little more supervision, for criminal elements and people we don’t like, is probably a good thing. Insisting on an archaic “right to be let alone” in a globally interconnected world, other than being laughable, is hindering the democratization, simplification, cheapification and commoditization of all life’s endeavors, including prevention of disease and curing cancer. Privacy is the last barrier to an eternal life of leisure and joy.
There is currently a well-coordinated, well-funded and extremely successful campaign to help us shed the ball and chains of privacy. Whereas three quarters of a century ago we realized that work made us free, today we recognize that sharing our private information will bring us personal liberty. Freedom and liberty, contrary to what you may have learned in kindergarten, are earned by hard work and individual publicness. Since the innocent days of prancing naked on the banks of the Euphrates, we learned the hard way that free markets are the engine, the heart and soul, of humanity, and free markets are hampered by the original sin of privacy, which introduces an information asymmetry that makes the markets anything but free. To liberate ourselves, we must liberate our markets first.
America, as usual, is leading the way in liberating international markets. Our unique form of government with its three famous branches of corporate, lobbyist and executive is best suited for freeing humanity, because our government has evolved from representing a small group of citizens to representing global markets. For those too old to see the glory, rest assured that there are large checks flowing freely between the three government branches and balances are meticulously calculated by our leaders. The Singularity, you see, is not a nebulous prophecy about cyborgs. The Singularity is here and now, as this is the precise moment in human history where governance, technology, apathy and savvy leadership are perfectly aligned to take us back to the future Garden of Eden.
On Friday, July 10, 2015 the 21st Century Cures Act was passed by the House of Representatives of the U.S. Congress with overwhelming bipartisan support. Relatively speaking, the bill is rather short and concise at 362 pages, so one can be certain that our wise representatives have read every syllable and understood all the technical intricacies of this groundbreaking legislation before casting a vote. Having been a skeptic in the past, I must admit that I am particularly awed by the mathematical prowess of our legislators who empowered the Secretary of Health and Human Services to require that scientists use Bayesian statistics in their pharmaceutical research.
The Act that will cure us in the present century is the culmination of a gigantic effort by the corporate and lobbyist branches of our government to bring potentially lifesaving medicines to the market faster, in larger numbers and at lower costs to the manufacturers. To accomplish this the Act is cutting through the useless regulatory red tape of the Food and Drug Administration (FDA) and bypassing the obsessive scientific insistence on rigorous clinical trials, which can take decades to produce an approved medication, while people continue to needlessly die. Instead, an iterative and more agile process is being put in place by the Act. Do a little research, a little testing, a little checking and regulating, fail soon, fail often, and pivot quickly based on post-market laboratory surveillance.
Sure, people will continue to die (not necessarily the same ones and perhaps a few more), but now they will die for a good cause. The road to heaven, you know, is paved with necessary atrocities. Privacy of course is not congruent with the needs of a learning laboratory system, and the Act has taken the first steps to remove some of the anachronistic obstacles erected by the privacy sections of HIPAA. Once the Cures Act becomes the law of the land, personal health information will become shareable for research purposes, and the cumbersome need to obtain informed consent from human research subjects will be waived if illustrious researchers estimate that the experiment poses “minimal risk” to those experimented upon. Illustrious researchers have always been humanitarians first, and scientists second (savage sadists was a distant third), so we should be fine.
Less than a fortnight after the Cures Act swished through Congress, the lobbyist branch came up with a whitepaper to guide the next steps in our road to redemption. Calling it as Oracle, IBM, Intel and PhRMA, all esteemed members of the corporate branch, see it, the lobbyist prescription is to dismiss any shreds of privacy and self-determination laws left standing, including the Common Rule which protects the rights of human subjects of medical research. The Common Rule is the American implementation of the Declaration of Helsinki, which was developed by the World Medical Association, following the peculiar events that led to the creation of the Nuremberg Code. The Common Rule is thus a relic, an overreaction to a bunch of idiots who thought they could somehow engineer a perfect race of humans, and among other things engaged in ample exploratory research. Stuff like that cannot happen anymore, because now we have Internet, so it’s time to get over it, put it all behind us and move forward.
Privacy rules, you see, have “opportunity costs” for the corporate branch of government, and as such are strongly affecting the movement of checks between the branches, and the size of balances everywhere. The lobbyist whitepaper is making an exceedingly compelling argument for permitting unchecked collection and trade in all sorts of personal information, not just medical or genomic. The banks have been doing it forever and it's all working just fine, other than a little innocuous leakage into marketing databases. Why should other corporate clients be treated differently than the banks? It’s simply not fair, and “lives are being lost” because of our failure to equally protect all corporate members from undue regulatory burdens. A stark example of unfairness is the preferential treatment afforded to the Centers for Medicare and Medicaid Services (CMS).
On November 13, 2014, the CMS published a final rule regarding its physician fee schedule for 2015. Tucked neatly inside it, there is a little section promising to “provide clear legal authority for Health Insurance Portability and Accountability Act (HIPAA) Covered Entities to disclose any required protected health information” to the CMS. The “required” disclosure is for information ranging from clinical to “health behaviors” to a catchall “other data”, such as “participant employment status, participant educational degrees pursued/achieved, and income”, all “with identifiers that allow linkages across time and datasets”. The subjects of said disclosure are all entities “participating in the testing of past, present, and future models” funded by the CMS, including people not covered by the CMS, which is pretty much all people in this country.
The CMS needs the information to evaluate results of research projects, which by its own admission could have adverse effects on participants, with no mention of informed consent being needed from test subjects. How is this fair? If the CMS is asserting such latitude, why shouldn’t the corporate branch enjoy equal opportunities? What has the CMS done for you lately? If you are going to trust someone, why not trust a good solid brand-name, like say, the Coca-Cola polar bear, or the Marlborough man? If somehow doctors came to your mind in this context, the lobbyist whitepaper is quick to point out that, by winning Jeopardy, IBM’s Watson proved once and for all that “doctors are no longer the experts they once were”. And no whitepaper can be complete without reminding us that if we don’t get our act together quickly, China is going to eat us for lunch.
So that as they say is that. We must comply. Yes, for some of us it will be a little awkward in the beginning, but many have already made the transition, and frankly they seem to be just fine. This is after all an inevitable stage in human development. After losing our innocence, we began eking out a meager and perilous living by scratching food from the dirt beneath our feet. We looked underneath the dirt and discovered carbonized dead vegetation and digging deeper we found other fossilized lifeforms. We sustained ourselves comfortably on the dead bodies of those who came before us. For a brief moment, we looked up and considered the infinite bounty of the universe, but that seemed too hard. The disruptive innovation of our times is to fast forward to a distant past and turn on each other to extract untold fortunes from mass digital cannibalism.
Posted at 9:07 AM