Just a quick note to put out a thought. I’ve done a lot of work with
informed consent,
and am one of the people pushing the idea that in its current form it
isn’t serving our needs as a society, as patients, as scientists, as
people. That’s pretty much the whole point of my
TED
talk. And I’m a supporter of projects like
Reg4All, which
embrace fair information services practices as their basis. There’s a
real role to play for that approach, especially in aggregate level data,
or in recruitment of people for studies that will in turn require
informed consent.
But I am noticing a disturbing trend in the conversation around consent,
one that I intend to combat fiercely, which is the idea that
informed
consent itself is the problem.
I don’t think it is. I think it’s the way we do it that’s a problem.
When it’s used as a shield against patient involvement, or as an excuse
to deny people their data, that’s a problem. When people don’t
understand the forms and are rushed through the process, that’s a
problem. When data can’t be integrated into larger and larger studies
because of consent, that’s a problem.
But the idea that we should be informed about the risks
and benefits to ourselves and society before we decide to share our
data? I don’t think that’s a problem that needs disrupting. We need to
embrace better design for informed consent. We need to bring it into the
21st century, to make it compatible with distributed computing, with
large-scale mathematics, with the internet. That’s clear.
None of these problems, together or collectively, mean we should treat
the issue of consenting people into research as a simple transaction
cost. It’s not about reducing the “friction” of “participation” to a
few clicks here or there. If we treat informed consent as a transaction
cost to be minimized or eliminated, we may solve the problems of data
liquidity.
But data liquidity, as we’ve seen in national security, social media,
and more, doesn’t always come alongside beneficence, justice, and
respect for people. That’s the point of informed consent, not liquidity
of data. Health data is one of the only places where informed consent -
not just simple clicking - is part of our cultural heritage.
I think that’s a feature, and not a bug. If we can’t find a way to
balance informed consent, and its ethical heritage, with data liquidity,
that failure is on us.