RRI Tools

There is a revolution happening in health, driven by makers in biology. This nascent innovation ecosystem thrives in maker spaces and community bio labs that allow people of all ages to engage with engineering and biology in non-traditional settings, building on increasingly distributed and inexpensive health technologies. Concurrently people interested in solving public health problems are turning towards crowdfunding, which poses complex ethical, safety, security, and governance issues.

The Citizen Health Innovators Project will enable the fast-growing ecosystem of health innovators to develop a culture of responsibility that reflects its pluralistic and open-source ethos. We will facilitate interactions between this emerging ecosystem and formal regulatory institutions (FDA, etc.) to support responsible innovation in distributed networks. We believe that shining a spotlight on makers in biology will help demystify bio-innovation and bio-fabrication and encourage larger public interest and involvement.

This project is the beginning of a long-term process to establish a social license to operate, creating public trust and support for such an ecosystem. We anticipate that structured engagement with and within the health-focused maker ecosystem will lead to mechanisms to develop and adopt a culture of responsibility, ensuring that as participatory health innovation flourishes, social benefits are maximized and risks minimized. Constructive links with the federal policy community will enable on-going conversations with the nascent ecosystem, protect patients, and support innovation.

The project has compiled some relevant information on the issue:

• For more info about the concept "Citizen health innovators" read Questions & Answers: Citizen Health Innovators - interview with Eleonore Pauwels 

• The section "Stories of Modern Health: When Patients Innovate" - includes several inspiring examples and narratives.

• The Citizen Health Innovators Map provides an online geospatial inventory of the makers, inventors, and other networks of actors driving democratized health innovation.

  The map can be used to examine the locations and projects of health inventors who operate in collaboration with community bio-labs, makerspaces, Fab Labs, crowdfunding platforms, start-ups and hospitals. While the map is intended to provide networking capabilities for the health innovation community, it will also serve as a tool for government regulators, the general public and the at large scientific, bioethics and biosafety communities to identify where activities are occurring, and how fast it is expanding.

  This map is based on publicly available data from official websites, scientific literature, government reports and records, and newspaper and journal articles, but this field is dynamic, and the map is a work in progress. This form allows users to submit an entry, make a comment about an existing entry or correct existing information. Comments can also be sent to [email protected] Thank you for taking a look: All suggestions will be reviewed and incorporated into the map.

• The section "projects" - includes several examples of Citizen Health Innovators Projects