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\begin{document}

\title{Consent Isn't A Transaction Cost}



\author[1]{John Wilbanks}%
\affil[1]{DEL-FI}%


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  \date{May 28, 2024}


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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.

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