Perhaps it is the mindset of a computer professional – ‘how can this data be used’ – that gets my thoughts running. I think it takes a special mindset that comes from years of seeking out relationships and connections in data sets to understand just how powerful they can become. You see, today I had to submit to a drug test. It was nothing out of the ordinary – place a swab in your mouth and hold it there. And it was for an innocuous reason. But the form that accompanies it to the lab is what struck me as odd.

The form had a number of required data fields – Social Security number, full name, complete address, birth date. And it had very little in the means of a disclaimer. How would this information be used? What does the lab test for exactly? Who gets this information and how would it be shared? In the end, I gave the information – but at what cost? As someone concerned with my health, I’ve never drugged or smoked. My approach was “if the data is shared with someone, all they will see is a clean slate”. But for many, that is not the case – and that may have nothing to do with drugging at all.

The disability community has much to worry about in this area. With the cost of health care and insurances exploding, compilations of data determining the risk and health of the prospective insured are one of the best ways to reduce costs. How many public records do you have available to the world? How many times have you provided your Social Security number for something as simple as a drug test? And how many times have you asked exactly what will be tested for in that swab? With many diseases and health issues becoming as easy to test as a mouth swab, it’s no stretch to imagine additional tests being done or the results of your test (pass or fail) being added to databases nationally – after all, I was not been told what will be tested or how the results will be shared (or who with).

Companies like Choice Point specialize in collecting this data. They purchase and mill data from thousands of government agencies across the country, linking the data into complete stories of people like you and I. In addition, Choice Point has contracts with many companies in our country to fetch and retain additional non-public data, such as health, income, demographics, purchases and habits. One report from such a company can tell every account you’ve ever had; every address you’ve ever lived at; every home and car you’ve ever owned; every ticket, citation and legal matter you’ve ever been part of; insurance profiles of many different varieties; purchase histories and tendencies; significant others and household members – and that is just the start.

For people with disabilities and many others, information like this could be used in so many negative ways. If a prospective landlord found out you use a wheelchair, would they be 100% unbiased or a little worried about their floors? If you filed a homeowner’s insurance claim due to a break-in of your home, will your next provider charge you more or even cover you? If you fail a drug test due to a lab error does an employer see that on a record? With most protections aimed only at specific medical data or credit-related information, there is very little right to see this data or to make corrections to it.

This may strike some as paranoid. Others may call it a conspiracy theorist’s worst nightmare. And while much of this article is present-day reality over speculation and concern, one has to also understand that this is a young industry. As storage becomes more available to the IT industry and the ability to store and record more and more data is gained, that data will inevitably be shared with others for the same reason it is collected by those who ask for it – convenience, mitigation of risks and profit. I once read that Walmart records and stores every item purchased on every transaction in every store – a powerful bit of information.

For now, we assume that information is private, but we have no assurance. Without a constant eye on the issue, the trips to your local store for ice cream on your credit card may just be the reason your health insurance increases your rates next year.