E03 - How Might Ethics Review Be Reimagined in the Age of DIY and Open Science?

Biohackers (aka DIY biologists, citizen scientists) are non-traditional researchers who operate outside of establishment research settings. They actively create knowledge and believe in open-source sharing of scientific information and the democratization of science. Members of the biohacking community have begun loosely organizing themselves by holding annual conferences and by creating mission statements, biosafety manuals, and codes of ethics. Research designed by biohackers may not be compatible with what a traditional IRB would expect. Biohackers trying to solve their own health problems are frustrated with the traditional biomedical establishment and are working on therapies for their own diseases. Desperate patients may assume huge risks on unregulated experimental treatments because the traditionally paternalistic stance IRBs take on risk does not allow for a dialogue about reasonable assumptions of patient risk. Arewe preventing the development of open-source biotechnology solutions by not broadening our definitions of researchers and research, and by not blending establishment with non-establishment institutions? This session will explore some of the cooperative projects in the biohacking community, and facilitate discussion of how to move forward.