Citizen Science

This article focuses on making study results available to patients who are providing the medical data.  But it touches on more general themes - on the right of patients not just to control their own data but to access the results of research into their illnesses, and to be empowered to do some of the research themselves.

Scientific research wasn’t always considered the domain of professionals. In the 1700s and 1800s, most people practicing science made a living in other fields. The classic example is Benjamin Franklin, who was a printer, publisher and public official but still made key discoveries in electricity. Others conducted experiments at home or in labs that were funded either by themselves or by wealthy supporters.

In the 19th century, science became increasingly professionalized. Many practitioners saw that to improve the quality of their work and to take on bigger projects, they needed to go beyond basement tinkering. Support emerged for training scientists at universities, creating professional societies and seeking sustained financial support from the government to tackle important public issues.

Melanie Swan, an investment adviser in Silicon Valley, is one of the citizen scientists questioning the traditional approach. She has written a smart-phone app that lets users study their genetic data to find any correlations between known efficacy rates for drugs associated with certain genes. Ultimately, she says, the goal is to help patients tailor their own treatment plans.

The article mentions Genomera, a start up for sharing health data and creating clinical trials.