On Friday 24 August I have some appointments in DC but I went early so that I would not have to travel Friday morning and because Genetic Alliance was having a workshop to for members of organizations who want to talk about first steps in establishing a biobank. I attended this. Some well-established organizations were there but the term “biobank” is new and has new practices associated with the concept, even if many practices associated with biobanking have been done in research for a long time. I enjoyed the meeting thoroughly because I enjoy hearing what kinds of questions people ask.
I am not sure what could come of this meeting. I was glad to say hello and visit the organization but the primary way in which I evaluate community organizations is in their ability to teach other people about its work and to mobilize activists. Genetic Alliance relies on volunteer participation and activism in that people who are concerned about rare genetic diseases should be able to talk amongst themselves about diseases, current research, and activist efforts. However, the expectations I have about how an organization should manage outreach are in line with Internet culture, and Genetic Alliance still manages itself in a way that seems foreign to me and in line with non-Internet using traditional non-profits. This criticism is not negative to Genetic Alliance because I really cannot name an organization in the field which achieves my ideal, and Genetic Alliance is actually closer to my ideal than any other organization I could name. But still, I do not think that I am asking too much to expect that organizations develop their online outreach before they develop their paper or in-person outreach, and organizations just do not do that yet.