Realizing Present and Future Promise of DIY Biology and Medicine through a Trust Architecture

People with diabetes have been experimenting and self-modifying diabetes devices and technologies for many decades, in order to achieve the best possible quality of life and improving their long-term outcomes. There are now hundreds of individuals using DIY closed loop systems globally. They work similarly to commercial systems at a basic level, automatically adjusting and controlling insulin dosing, but are different in terms of transparency, access, customization, and usability. The potential downsides to DIY closed looping include varying responses from individual HCPs, who may be concerned about their own liability. However, initial outcomes from this self-selected community (including adult and pediatric populations globally) have been positive. There have now been several studies documenting improvements in A1c, time in range, and other outcomes such as quality-of-life benefits. More studies on quality-of-life improvements and more collaboration between companies and the community are recommended.

The “do-it-yourself” (DIY) brain stimulation movement began in earnest in late 2011, when lay individuals began building stimulation devices and applying low levels of electricity to their heads for self-improvement purposes. To date, scholarship on the home use of brain stimulation has focused on characterizing the practices of users via quantitative and qualitative studies, and on analyzing related ethical and regulatory issues. In this perspective piece, however, I take the opposite approach: rather than viewing the home use of brain stimulation on its own, I argue that it must be understood within the context of other DIY and citizen science movements. Seen in this light, the home use of brain stimulation is only a small part of the “neurohacking” movement, which is comprised of individuals attempting to optimize their brains to achieve enhanced performance. Neurohacking itself is an offshoot of the “life hacking” (or “quantified self”) movement, in which individuals self-track minute aspects of their daily lives in order to enhance productivity or performance. Additionally, the home or DIY use of brain stimulation is in many ways parallel to the DIY Biology (or “biohacking”) movement, which seeks to democratize tools of scientific experimentation. Here, I describe the place of the home use of brain stimulation with regard to neurohackers, lifehackers, and biohackers, and suggest that a policy approach for the home use of brain stimulation should have an appreciation both of individual motivations as well as the broader social context of the movement itself.