Editor’s note: This commentary is by Steve May, of Richmond, who is the former national director of state affairs for the Hemophilia Federation of America and the founder of the nonprofit The Forum on Genetic Equity to combat genetic bias. He also is a member of the Selectboard in Richmond.
Deus ex machina is a Latin phrase. Literally translated it means that “God is in the machine.” The line between things made from technology and technology’s impact on all of us is getting murkier and murkier.
News headlines this summer did an exceptional job of reminding us just how much God truly is in the machine with reports that our enemies can actually hack the software that operates hundreds of thousands of pacemakers. We now are facing down a reality where our enemies have the capacity to inflict bodily harm across large portion of our society with a series of solitary keystrokes if they so choose.
This was not the only technology story this summer. Another one told of a Wisconsin company that has offered to implant its employees with an RFID chip for the sake of efficiency. It seems that remembering a passcode is simply too much of a hassle for many of us. So the company will place a chip the size of a grain of rice into your hand. This chip will have the capacity to control everything in your life. You need to open a door? Wave your hand, and, like magic, the door opens. But it doesn’t only work with doors, it can access bank accounts. How about at work … need a report? You wave your hand and photocopying is magically easier thanks to your chip.
In the age of big data, one can’t help but wonder about the unintended consequences of “getting chipped.” Doesn’t it mean your every move can be followed? It was one thing when your shopping habits were known because you used an ATM card, but it’s a whole different thing to know that one is in the bathroom multiple times a day because your coming and goings can be followed. And while that is invasive it’s frankly more benign than some of the more nefarious intentions connected with applications of this new technology. After all, if one can hijack your pacemaker, what’s to say that your genetic information can’t somehow be linked? And if that information is linked, are the privacy safeguards adequate?
Once upon a time we spoke of the intellectual concept of “interface” as the place where technology and the end user would meet together and function. Today, interfacing with tech increasing is about the actual integration of technology into us, into our things, and the like.
More than half of the company’s employees signed up to get a chip implant because of the convenience. But understand, to get this convenience someone had to take and implant a RFID chip, an item roughly the size and shape of a single grain of rice, under the skin of the web that connects the forefinger and thumb. Be clear, the physical pain associated with altering one’s own physical appearance was not deterrent enough to cause people to stop.
Rather, creating a biometric key was something preferable for people when compared to stumbling over the litany of partial bank codes and phone numbers from people who moved and seven houses ago.The fact that this minor medical procedure somehow is less invasive than trying to remember the random arrangement of numbers that permeate your life speaks volumes: you know … your anniversary, or the year you and your partner graduated college. The random assembly of numbers … old phone numbers, abandoned passwords to your Myspace account, and the like, all gone because you let someone inject this thing into your body.
In the last few months, scientists working with DNA and on DNA have actually figured out ways to save information and data in actual DNA. They promise that this advance will change the way we interact with our own data, not to mention everyone else’s. Supporters argue that saving data in DNA holds great promise, because its sequencing is akin to an unbreakable personalized logarithm. To their credit, it very well may. It may also take up far less space, which also desirable in the IT world. But it remains an open question as to whether or not our personal health information will be compromised or accessed in ways that put ordinary Vermonters at risk.
The breakneck pace of change with regard to data and privacy is nothing less than harrowing. It requires that we as a society step in to protect neighbors and friends who don’t understand both the benefits and the risks of this era and the choices in front of them. Vermont should aspire to be the first word in privacy in general and genetic privacy in particular. Rigorous oversight will create its own economic opportunities.
Vermont is a value-added brand in the economy. Over the years we have seen commercial operators going to great lengths to attach themselves to the “Green Mountains” and “Vermont.” Vermont as an intellectual concept is valuable. Vermont and privacy has the opportunity to be every bit as lucrative.
The majority of us are committed to a reality where a keystroke is simply a keystroke, but the arc of progress seems hellbent to make sure that this objective fact is no longer true. As such, we owe it to the general public to safeguard the genetic privacy rights and personal health information of every Vermonter in the age of big data.
In the year 2017 information is currency. It is absolutely essential that we have a clear understanding of the legal, ethical and societal consequences that these advances might have for the rest of us, across our daily lives. We owe it to ourselves and one another to balance privacy and progress. It has never been more important that the legislature move to safeguard the individual privacy rights of every Vermonter.