Last weekend I took the train from New York to Baltimore. I am sad to report that in my experience, Amtrak has been working hard to catch up with the airlines in making travel as annoying and difficult as possible. Having arrived an hour and a half ahead of schedule, I was hoping to catch an earlier train. "New rules," the ticket agent informed me. "Starting one hour before departure, the ticket price increases and there will be an additional $140 fare."
The train ticket already cost more than the same trip by plane, so I declined and spent the next 90 minutes enjoying the entertainments offered by the overcrowded, dingy terminal. The low estrogen part of me thought, "What if I just smudge out the time on the ticket, get on the train and hope the ticket person does not notice?" It had been a long day and it galled me seeing a half-empty train leave the terminal when I paid for a business class ticket and could be on my way home.
Luckily, the sane part of me decided to wait. On this trip I did not get the relaxed conductor who walked past me twice before bothering to punch my ticket. This time the conductor whipped out a scanner that read the ticket bar code. It would be hard to know which line to smudge on that thing.
I realized with alarm that slipping under the radar is not so easy anymore. As our comings and goings are increasingly computer-monitored, small acts of defiance and rule-breaking are immediately caught. While one could argue that there is nothing to worry about if you behave, I am increasingly concerned about the definition of "behave."
Nowhere is this more of evident than in the health field. In 2009, the Senate passed a stimulus bill pouring billions of dollars into creating a medical database that can track people from birth to death. Everything about you can be shared, stored and searched as delivering medical care is increasingly computerized and centralized. In the future, the equivalent of a bar code can be tattooed at birth and you can be tracked all your life. Okay, you don't need a bar code -- your fingerprint or better yet, DNA swab can do the same.
Common use of a DNA swab has not made it into health care yet, but its use/abuse is being tested in law enforcement. Maryland just overturned forced DNA swabbing in criminal cases in April, but about half the states allow forced DNA collection if you are arrested. In some states, DNA samples can still be requested when drivers are stopped for routine traffic violations.
In health care we are being told information sharing is "voluntary" and you can opt out. Good luck with that. Once you fill out a form to get any kind of care and it is in the system, it will be accessible. And if you will not share with your insurance company, you will not get coverage.
On Friday, I called a new dermatologist to set up an appointment. They already had all my basic personal information. "You must have been here before," the secretary commented. I had not. With medical information sharing, in the not too distant future, the dermatologist will have a record of which spots I want removed because I mentioned them to my OB/GYN. Then when I turn on my computer, advertisements for products to minimize the appearance of the exact kind of spots I have will pop up on my screen. A good computer algorithm can match my medical issues with the right advertisers. These programs already tell me which books and products I might like based on what I buy online or with my credit card.
Annoying and privacy-destroying but unfortunately, I can see people adapting to these intrusions. They should not. What if I do not take my medicine (input from the pharmacy where I have not refilled my prescription), or have put on 30 pounds and have become pre-diabetic? Now when I turn on my computer l will be assaulted with advertisements asking me if I am feeling fat and frumpy or am I depressed? Proponents of this kind of information-sharing claim that careful monitoring is good for your health. It will prevent mistakes because everyone will know everything about you. Monitoring is the new substitute for being cared for. The computer may be collating data but I am not feeling the "care."
My insurance company may discover I am costing them a lot of money by not following my diet. All those extra tests and emergency room visits because I insist on frequently drinking 32-ounce sugary heart-exploders (courtesy of info from my debit card). If Obamacare is dropped, they can drop me because they will have documented proof of my health misbehavior. Forget drunken pictures on Facebook. Soon, a potential employer could know if my doctor is concerned about my cholesterol level or if I eat too many burritos. Maybe they should hire the Union College graduate who takes her medicine instead.
Paranoid thinking? No, just a slight jump ahead of what is already happening. I try to be kind and a good citizen. I give to charity, floss my teeth and pick up litter. But I do not want the number of bowel movements I have a day available online. I don't want the person at the DMV or the Acme drug company to know which shots I have declined or what medicines I take. That kind of knowledge is power, and it is just one small step from knowing to regulating or worse. Today, we too easily give up our privacy rights to track criminals and get "better" health care. Tomorrow, in corporate or government hands, that information could be used in ways we cannot yet imagine. I think we should all be thinking twice before signing up.
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