Health Activism Online

"The Citizen Scientists," by Sara Solovitch. Wired, September 2001, pp. 144-51. Every time Wired publishes a story like this one, I decide to renew my subscription yet again.

It's not news that parents of children with medical problems go on the Web to find information. What makes this story about those parents different -- and a darned good piece of journalism -- is that it describes how some of those parents create activist groups around the condition that affects their children and, using the Internet as their meeting room, collect genetic material for research use -- providing exactly what researchers need to study these rare conditions more closely. One "citizen scientist" mother is even the co-applicant (with a medical research scientist) for the patent on a particular gene, which causes a serious medical condition in her children.