Danny,

I e-mailed you about this as well.

I am concerned that you are making the individual posts easily searchable through Google.     

Some of us use or have used our real names and e-mail addresses in posts--this is a particularly common practice on the kids board. I know that in the past when I have done this, I have gotten e-mails from young people with CAH who were too embarrassed to post questions as well as private responses from regular posters with questions that they didn’t want to ask on the board--this made me really glad that I put myself out there.  However, I have also received a few perverted questions from lurkers on the board who were completely outside of the CAH community but just wanted to talk to or meet an "intersexed" person--this gave me a sick feeling and made me question whether or not it was a good idea to post here so openly (I stopped using my full name and got a less obvious e-mail address after this which probably explains why this doesn’t pop up on the first few pages of a Google search for me).  I think this decision could open the door for solicitation, and this is a very big deal because looking at the kids board, there are numerous posters who use their full name, put their e-mail in the body of the post, and use things like "want a friend" in the subject line.  I looked at the kids board, Googled the names of 5 posters who used their full names, and 4 came up as the first result on the first page.  There were also several people from the main board with posts that popped up as first or second results.      

Before assigning the unique URLs, someone would have to know to look here and then search the posts for the information so I felt less uneasy about putting myself out there and answering questions about surgery.  Don’t get me wrong, I realize there isn’t an expectation of privacy online but I also knew it was a choice to make individual posts searchable outside of the board and that it required assigning individual URLs.  If someone from your church Googled you to find out about your book, your blog, your businesses or for another reason entirely, they could be able to find information about your daughter, your decision about surgery, and discussions that may include the word intersex along with her first name if you’ve written about that issue (i.e. daughter "  " is not intersexed) , etc.,  since you have used her first name in posts (and it could be the first result if you posted it recently).  Same goes for anyone else who has used their full name and mentioned the first name of their kids.   

I understand that you are trying to bump up the general URL for the board to the first page so that you can raise awareness, but I’m wondering if the benefits outweigh the risk (especially since I think most people who need support for CAH also look at the second page of Google)? If you are committed to the idea of posts being searchable, perhaps you can put out a warning about not posting full names and e-mails so that at minimum, the kids on the kids board and everyone else can use more discretion.  Even just including the URL at the bottom of posts so people are aware that you are doing this would be helpful for future visitors (I think it’s a pretty common practice on message boards)?  Also, many posters used to commonly fill in the e-mail address field but I know you removed it awhile ago...can that field be excluded when you submit the posts?   

Alison W