If you start a group on Facebook, don't forget to post a warning for digital neophytes who won't read or understand the ramifications of Facebook's legal fine print that members are required to agree to prior to membership.
Anything that you post to Facebook - photos, confessions, and disease diagnosis - is automatically owned by Facebook. They have the right to republish or sell all of the information that they garner. Being a "closed" group is irrelevant.
Facebook has actually exercised very few of its legal rights with regards to copyright. But that doesn't mean that it can't, or that a different company in the future might not purchase the domain along with it's residual rights with an ambition to monetize the information.
Employers and insurance companies interested in risk profiling not only HER2 people but
family members as well would be especially interested in the type of information that would be potentially served up in a HER2 Facebook Group.
Anonymity would be virtually impossible because of the very social and geographical networking facility that makes it popular.
Here is a Reader's Digest version of the personal copyright loss that Facebook membership entails. Please refer to item #4.
http://www.legalandrew.com/2007/07/2...hings-to-know/