Data, Caregiving, and the Ethical Control

This was in response to the tweet pushing Fascism and the Caregiver.

It makes sense, doesn’t it? Those of us with the responsibility of managing large quantities of the personal data of other people constantly think about control. We have legal and ethical requirements to control access, to establish and maintain limits, and use best practices (such least privilege access).  Whether we are talking about the Federal Education Rights and Privacy Act (FERPA),  Health Insurance Portability and Accountability Act (HIPAA), or any of the dozens of other federal and state privacy laws.

We also have the responsibility to encourage use of the data, but always appropriate use. Use that adds value to the lives/livelihoods of those we serve. Above all, use that does no harm, intentional or otherwise, to those whose data it is.

Last week, there was an essay at InsideHigherEd with the statement that “Big Data are ethically neutral.”

Data are never ethically neutral.  How can they be? Data create a definitional representation of the world and actions of individuals. The simple act of definition is fraught with ethical dilemma. I’ve written before about our decision not to collect student sex beyond men, women, unknown/unreported. There needs to be legitimate reason to go beyond this level of detail that outweighs the risk of collecting information about individuals that can be put to nefarious use.

As I write this  on the weekend of a badly written, ill-advised executive order, I know that a number of my colleagues around the state and nation are rethinking data collection elements, especially those about religion or nation of origin. There is an ethical choice about what to collect. For what reason would it be necessary to collect religious preference? I fully understand why the military does so as there are at least three reasons: 1) providing adequate numbers of chaplains with knowledge and training across faiths and denominations; 2) knowing the last rites needed by each service member; 3) knowing what symbols to use on a tombstone. These seem clear-cut to me. However, I can rarely understand why any other government agency or private business would need to collect this. More and more, I understand even less why someone would provide it. The fact is, today’s majority group is no more than tomorrow’s minority group.

There are also ethical choices at work in creating data definitions, specifically in the coding of categorical data or the scale of numeric data. Any choice of categories, any choice of words to describe the category,  have the power to determine how people think about the data, from collection through reporting. A simple example is the tired phrase “first-time freshman” which we (at work) have replaced with “First-Time in College” and “Freshman” with “First-year.” It’s long past time to move away from gendered terms. After all, our flagship university has been enrolling women since 1972.  (When pundits start talking about “colleges and universities being resistant to change” I start pointing out all the ways they have changed in just the last 50-odd years. It’s quite amazing.)

I have control issues, so let’s get back to talking about control.

I’m suspicious of anyone that tells me they are controlling me or my behavior for my own good. It is is usually for their good. On the other hand, one of the maxims I always taught my sons was , “Rules are your friends. If you’re going to break them, make sure you know what rules you are breaking, and why.” Anyhow, there are rules that make sense. Rules for public safety and responsible living within the social compact. Control, in and of itself, is not a bad thing. Controlling access to data as a privacy protection is not only reasonable and proper, it is an ethical and legal obligation.

But if data are locked away, without use, they should never been collected in the first place. There should be use. If data are collected to serve a purpose, let them serve that purpose. If they can be used to serve a greater purpose, that should be allowed as well…with proper controls. The hacker creed is that “Data want to be free.” Perhaps, but they at least want to be more free.

In other words, it is about balance. This is the mistake I made as my wife’s caregiver – I tried to exert too much control, for her own good, of course. And mine, it was just easier that way.

“Easier that way” should probably never be the justification for anything.

2 thoughts on “Data, Caregiving, and the Ethical Control

Be nice. It won't hurt either of us.

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