Have ‘bio-citizens’ pushed us to a regulatory turning point?

bio
[We are at the beginning of] an upstart revolution where citizens are deciding not to wait around for a cure or even a diagnosis. From analyzing their own genetics and mastering genome editing on simple bacterial and viral cells to prototyping surgical devices, these “bio-citizens” are using newly available biotechnologies and resources to better understand and improve their health. Last September, with hundreds of them from the U.S., Mexico, India and China, we met at the renowned MIT Media Lab to discuss governance models for a “biotech without borders” movement.

We as a society are at a turning point.  We could build adaptive regulatory support that ensures safe and responsible citizen participation in health research, or we could drive these emerging communities of innovators underground or out of existence.

Is self-experimentation with gene editing techniques something we should herald as a new form of “permissionless” innovation? Or will self-proclaimed biohackers, by testing the regulatory framework, harm the emerging ecosystem of citizens who contribute to biomedical innovation? Could they induce federal regulators to shut down all types of self-experimentation or severely restrain different forms of citizen-driven biomedical research?

The path forward is not to promote radical, unregulated science, but to develop engagement channels that force citizens, patients, ethicists and regulators to rethink and design an adaptive oversight system—one that fosters empowerment and responsibility rather than just adherence to the status quo.

Read full, original post: The Rise of Citizen Bioscience

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