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.