[halr9000]

Your life or death scenario is an edge case with its own special complexities which should not be lumped in with discussions of the vastly voluntary choices we can make. Healthcare is heavily regulated as we all know. This raises the barrier to entry to new competitors, and leads to a less dynamic market where the status quo can last a long long time. So you end up with only 1 or a very small number of medical devices (with the associated software) for a given situation.

I would expect that the greater debate on privacy will, over time, hopefully lead to some changes in how we are able to control the data generated by our bodies. Until that happens, I’m going to take the thing that saves my wife’s life with the potential for some shadiness or simple distaste at what may happen to her data, or, I might look at it as her voluntary consent which was fully given with her and my knowledge well ahead of time — helps to save others lives, and some loss of control of that data is actually quite noble.

As you might guess, I started at the abstract, but ended up at the concrete, and my wife really does have such a device, similar to your example. And I also work in big data analytics industry, and get involved in these sorts of discussions pretty often.

[loup-vaillant]

Okay, let's try a concrete example: Gmail. Let us agree that the point of Gmail is to read people's email so it can send targeted adds. That automating the process (since human employees don't directly read that email) makes the thing more efficient, and thus worse, as well as easier to misuse.

Let us agree that I can indeed avoid having a Gmail account. Can I realistically avoid sending email to a Gmail user?

Nope.

There are just too many users. Maybe I can avoid sending mail to <anything>@gmail.com (though not responding to one will invariably be perceived as incredibly rude), but I cannot avoid having Gmail users send email to me. I cannot realistically notice ahead of time that [e-mail] is actually using a Gmail server under the hood, and not send the email. I cannot prevent Gmail users from talking about me.

I can reduce my exposure, but there are limits to what I can reasonably do. Your usage of Gmail is hurting my privacy. Okay, not yours, but definitely half of my friend's. I can't realistically ask them to either stop using Gmail, or stop interacting with me, now can I?

Let us agree that individual choices and individual actions don't work.

[CamperBob2]

That automating the process (since human employees don't directly read that email) makes the thing more efficient, and thus worse, as well as easier to misuse.

While I agree with your larger point, I don't agree with this subjective value judgement and am not sure why it's necessary to lump it in with the rest of your (valid) points. Why do I want to see ads for things I'm not interested in? How is that in any way "better?"

What I definitely don't want is unauthorized humans reading my email. (Even so, I have to assume that is exactly what will happen whenever I type or dictate anything into a computer. I've operated on that basis since before GMail, Google, or even the civilian Internet existed.)

[loup-vaillant]

I live in the EU, and as such am pretty much nameless for any Google employee. It's not like they would disrupt my personal life. Automated reading however, scales. The damage to any individual is lowered, but it is also multiplied by the number of users. Reliably so.

And now they have a mighty powerful pattern matching machine, they can easily ask more than where I could possibly spend money. They could ask for my political affiliations, or my sexual orientation, my social network (who knows, I may be related to the second or third degree to some nefarious terrorist?).

That last one is very worrying. Especially since recently, my country (France) is being eerily harsh with political opponents. I've just read a story about a journalist (whose income happens to come from YouTube & donations), who is being judged for… gang theft (the pun also works in French), risking up to 75.000€ in fines and 5 years of imprisonment, just because he covered the unhooking of a 8€ portrait of our current president in a Town Office (which usually have president's portraits, but this is not mandatory). Unhooking, they reportedly did not even take the portrait.

So yeah, I'm more and more worried about giving our governments the means to apply their increasing insanity. Sure, having an individual reading my private email is unacceptable, but that risk is getting smaller and smaller, in comparison, to the mass surveillance that automation enables.

[emmelaich]

> more efficient, and thus worse,

You'll have to detail this particular implication.

I for one would think the opposite.

* also FWIW, IIRC, they don't read email for ads any more.

[bkuhn]

Your life or death scenario is an edge case with its own special complexities which should not be lumped in with discussions of the vastly voluntary choices we can make.

Karen's and my 2019 FOSDEM keynote (and accompanying podcasts) discuss her struggles with the medical device industry and how those struggles relate to the larger set of choices related to technology that we make. This isn't an issue that lends itself well to short-form discussion. The issues are quite complex:

https://archive.fosdem.org/2019/schedule/event/full_software...

https://archive.fosdem.org/2019/interviews/bradley-m-kuhn-ka...

http://faif.us/cast/2019/jan/13/0x60/

http://faif.us/cast/2019/feb/19/0x61/

http://faif.us/cast/2019/mar/12/0x62/

http://faif.us/cast/2019/mar/20/0x63/