Would You Open-Source Your Body?

As you may have noticed, this column is pretty keen on opening things up - whether that's open source, open access or open government. But what about open-sourcing your body - releasing as open data the most intimate aspects of your physical existence? That's what the Open Humans Network is asking people to do.

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As you may have noticed, this column is pretty keen on opening things up - whether that's open source, open access or open government. But what about open-sourcing your body - releasing as open data the most intimate aspects of your physical existence? That's what the Open Humans Network is asking:

The project aims to break down barriers that make it difficult for willing individuals to access and share their data with researchers. To this end, the Open Humans Network creates an online system that helps match people who want to share their health data with researchers who would benefit from access to more information.

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The Open Humans Network hopes to accelerate scientific discoveries by making far more data available. The premise is that more individuals will join scientific studies if they are empowered with the choice to share their data. And the greater availability of shared data will allow scientists to conduct more studies, and produce more robust and meaningful results.

Currently, there are three projects:

“American Gut” – exploring microbial diversity of the human body;

“GoViral” – profiling viruses related to flu-like illness; and

“Harvard Personal Genome Project” – collecting genomic, environmental and human trait data.

With shared data from these studies, researchers hope to glean new insights only possible after combining the data, for instance, whether a person’s gut microbiome influences susceptibility to the flu.

It will not have escaped you notice that there are certain privacy implications in joining this project:

When sharing your data, you’ll need to understand that the data may be very identifiable. This means that someone may figure out your identity, even if you don’t share your name. Many members do not attempt to be anonymous, and instead proudly put their name on their Open Humans account and data.

Only for the brave, then - also, currently it is only for US citizens or permanent residents. But if it proves a success there, in the sense that enough people sign up, and useful scientific results can be extracted from their open personal data, it's not hard to see this spreading to other parts of the world. The key thing, of course, is that this is voluntary - unlike the utterly misbegotten Care.Data fiasco here in the UK which tried to enrol everyone in a smaller-scale version of the Open Humans Network on an opt-out basis. No wonder it went down in flames.

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