I review research projects involving genetic data and tissue collection for ethical and regulatory issues on a daily basis. While your generosity is admirable, I don't think informed consent is actually possible at this stage given our limited understanding of how these databases/collections will work and what they will be used for.
Fact is, the FDA isn't even quite sure, and we currently treat these very carefully on a case by case basis. A lot of times we have no idea how DNA info or tissue will be used in 10, 20, 30 years, and in the case of things like cell lines... your info becomes physically immortalized. I haven't seen one consent yet that is more than around 60% definitive on the "future use" of these materials.
I don't mean to sound alarmist here. And there has been some great science coming out of these types of projects. But I would still be hesitant at this stage to participate in these kinds of collections given their open-endedness. The FDA and related governing agencies are going to catch up with the privacy ethics of this process and plug as many loopholes as possible, but we aren't even close to that yet.
Maybe in the future scientists will have enough data to say: We are going to collect your tissue, look for X, Y, and Z, and then destroy it. At this point, the typical process is: We are going to collection your tissue, make cell lines, and then... let scientists do stuff with it. We have a general sense of the boundaries of what could happen to your tissue right now, but we have no idea what that would look like 10 years from now. From an ethics perspective, that issue just becomes geometrically worse over time.
Also, their posted consent is expired. Come on, Harvard!
Edited by M. Leary, 19 July 2010 - 10:29 AM.