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And how much notice to give someone or how much information you should give someone
so that they could be sufficiently informed to make an important decision
about, let's say, what kind of pacemaker to have implanted is really tricky.
It's not clear to me that more information is always optimal.
There might be an optimal amount of information that is a medium amount or
even a small amount of information that's vital to making the decision.
So Crisis Text Line is this pretty fantastic text messaging based crisis line
where teens, anyone who's having issues can text in, and say, I'm suicidal.
I'm not feeling great.
I'm having dark thoughts, and they'll respond by text, right?
And they're collecting all sorts of information about their users, and
they actually have some potentially compelling information.
So they can see spikes in population trends, and they can see hotspots in
certain locations where it looks like there's more suicidal thoughts on Fridays,
near high schools after football games or around the prom.
I mean, this could help medical institutions to scale up to deal with
population level crises, but again, there's this question about
how much they can share the data, whether they've asked for permission.
And when you talk to them about the decision about how much notice they should
give their users about their service and how much information they're collecting,
they will say, look, we've done tests on this.
And we know that for every text that we send, every extra text we send to
the troubled teen at the outset, greatly decreases the likelihood that they will
stay on the line with us and continue to talk to seek counselling, right?
So it's easy to sit in the ivory tower, and to say, well,
it's really important for privacy to send them a privacy notice.
So you say, we would love to help you, suicidal teen,
but just read this 155 page notice and agree to it, right?
What's going to happen if you do that?
The line is going to go dead, and
that's a very scary prospect in this particular scenario, right?
So how much notice to give, I think, is not just a question of allowing
people to make the right decisions, but also making sure that you've
balanced how much notice to give against countervailing concerns.
In the medical device context, it's especially hard because the kind of notice
you want to give must be based on your estimation of the risks involve and
the benefits.
And I think we're at a moment when, with connective devices in particular,
where we don't have a full understanding of the benefits or the risks.
We have some inklings about what risks are likely to come, and
we have some inklings about the benefits that are likely to come.
But we don't have certainty, at all, on either front.
And without that kind of certainty, it's very hard to say to someone,
here are the pros, here are the cons, you make your choice.
Yeah, it's really tricky because this is, again, in which what kind of
device we're talking about, the context in which you get the device.
Did you just order it online or
did you have a conversation with your doctor about it?
That's going to affect, obviously, the choice that you make and
the kind of notice that we want to be offered.
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as compared to, let's say, an advertisement for a medical device, right?
What can a website say,
what must the website tell you about the medical device before you order it online?
I think we need to be extra worried in that context because someone could make
a decision, and we don't have any way of reading how they're making the decision.
We have very few ways of reading it besides web analytics.
Whereas with the doctor, the doctor, if they're doing a good job,
if they're doing their job, right, fulfilling their ethical and legal duties.
They're going to assess a lot about the patient and try to understand
how much the patient needs to know in order to make an informed decision.
So there's going to be some bare amount of information that absolutely every doctor
has to share with every patient.
And then there's going to be an extra layer that is discretionary.
That's about the doctor's assessment of what kind of information do I need to
share with this individual for them to make an informed, educated decision.
Lauren SolbergAssistant Professor
