The Ethics of Hiding Your Data From the Machines

Molly Wood at Wired: “…But now that data is being used to train artificial intelligence, and the insights those future algorithms create could quite literally save lives.

So while targeted advertising is an easy villain, data-hogging artificial intelligence is a dangerously nuanced and highly sympathetic bad guy, like Erik Killmonger in Black Panther. And it won’t be easy to hate.

I recently met with a company that wants to do a sincerely good thing. They’ve created a sensor that pregnant women can wear, and it measures their contractions. It can reliably predict when women are going into labor, which can help reduce preterm births and C-sections. It can get women into care sooner, which can reduce both maternal and infant mortality.

All of this is an unquestionable good.

And this little device is also collecting a treasure trove of information about pregnancy and labor that is feeding into clinical research that could upend maternal care as we know it. Did you know that the way most obstetricians learn to track a woman’s progress through labor is based on a single study from the 1950s, involving 500 women, all of whom were white?…

To save the lives of pregnant women and their babies, researchers and doctors, and yes, startup CEOs and even artificial intelligence algorithms need data. To cure cancer, or at least offer personalized treatments that have a much higher possibility of saving lives, those same entities will need data….

And for we consumers, well, a blanket refusal to offer up our data to the AI gods isn’t necessarily the good choice either. I don’t want to be the person who refuses to contribute my genetic data via 23andMe to a massive research study that could, and I actually believe this is possible, lead to cures and treatments for diseases like Parkinson’s and Alzheimer’s and who knows what else.

I also think I deserve a realistic assessment of the potential for harm to find its way back to me, because I didn’t think through or wasn’t told all the potential implications of that choice—like how, let’s be honest, we all felt a little stung when we realized the 23andMe research would be through a partnership with drugmaker (and reliable drug price-hiker) GlaxoSmithKline. Drug companies, like targeted ads, are easy villains—even though this partnership actually couldproduce a Parkinson’s drug. But do we know what GSK’s privacy policy looks like? That deal was a level of sharing we didn’t necessarily expect….(More)”.