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Peggy Heinkel-Wolfe

writing for parents of the bravest hearts

Peggy Heinkel-Wolfe

green writing for parents

Informed consent

Sometimes a problem comes through our family’s front door, but because I’ve  solved a problem like it before, I don’t feel the worry and anxiety I used to. That’s one thing good about getting older – the been-there-and-done-that feeling gives you confidence.

Even when something new and different comes along, those things aren’t worrisome because there’s a sense you’ve seen some version of it before. Garage sales become eBay. The Sears catalog becomes Amazon. High school’s gossipy mean girls become Facebook.

I would argue, though, that sometimes we forget hard lessons when it suits us. We solved the problem of human experiments years ago and we need to remember the solution applies in many situations.

I wouldn’t have understood the meaning of informed consent if not for raising Sam. Some interventions offered to people with autism and their families can make a real mess. The first time we agreed to participate in a true experiment, I was very grateful for the care the psychology researcher had given, and the university’s institutional review board had reviewed, to make sure our family was fully informed of the risks. You might think an experiment to help Sam and his younger brother learn to play games together wouldn’t need to be deliberately thought through, but it does. Their budding relationship mattered.

I worry about the current ethos; technological innovations are driving a lot of our interactions these days. Eager tech start-ups are taking their barely formed innovations and throwing them out into the world to see what happens without giving any thought to informed consent for fragile families and communities.

For example, I’m not the first person to notice that we are in the middle of a giant experiment with self-driving vehicles–an experiment I don’t ever remember being asked whether I wanted to opt into. A few years ago on a cross country trip, I couldn’t see the driver behind the wheel of a sparkling new big rig bobtailing down the otherwise quiet interstate. As I passed by, I tried to see if the driver was just really short, like me. I didn’t see anyone in the rig. But mostly I remember being upset that if this was some kind of test drive, I was not notified and given the option to take another route. It doesn’t matter that the sale of the automobile is in terminal decline. This experiment needs to be thought through.

When I hear “disruption” or “creative destruction” or some other jargon, it’s been-there-done-that. The words are usually masking an experiment the inventor or company hopes will make them money, and taking everyone’s resilience for granted.

Let’s not.

 

1 Comment

  1. Annette Fuller on April 8, 2019 at 4:18 pm

    I totally agree. I do respect innovations, but thought and vetting needs to go into each one. Some folks say: “The free market enterprise system will take care of it,” as if that is a license for anything goes, and that “the market” will correct it by embracing good products and rejecting ones with bad outcomes. Not necessarily true. As consumers, we have rushed into many things that were not good for society as a whole.

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