Privacy compromised

changed my mind, sorry. 

We just enabled the topic to be in the active topics again, hoping everyone can stay respectful and supportive. 

Thanks again for sharing your advice.

Just re-posting this:

We agree and ask that you help keep our community safe by not submitting personally identifiable information in Posts and Topics. Other tips include: 1- Do no use your real name, recognizable nickname, addresses, phone number or kids names 2- All posts and screen names are searchable by Google or other internet search engines. 3- Don't use your photo as your avatar if you don't want to be recognized.

I have just spent some time over the past two days pinging bco.org looking for a way to hack the private messages and haven't been able to do so. I used some general SQL, PHP, Ruby, and spoof URL's. Generally, I can hack a site if I want to and there is a back-door.

If I wasn't keeping my cancer status private I would ask a couple of friends who are far more creative hackers than I to give it a shot.

I am perfectly aware that this is a public site, but someone could spend hours and hours on here without figuring out who I am. I was all well aware of the TOS. Somehow, and for this I confess my naivete, I didn't expect threads from forums to be posted on Facebook as a recruiting tool. As you can see, I have changed my avitar so that a match can't be made visually.

I applaud the mods for changing their approach to Facebook. Facebook is far more public, in my opinion, than this niche site. Once again, I am reminded that "if you didn't pay for the product, you are the product."

*susan* 

I forgot to add that we are not going to post anymore on FB. Sincerely, we did not just do this for 'publicity', rather as a means of bringing all the women who are in discussions on our FB pages over here. We decided we would make Wednesdays our "Community Day" and feature a topic to hopefully help women find us, who need us. 

Our sincerest apologies that we upset some of you.

The Mods 

I always saddens me when we have to be reminded about respect and name calling. You can be a straight shooter without resorting to that. We are all adults and and don't deserve to subjected to to disrespectful behavior and name calling. We should all be above that by now. Caryn 

Mods, If I nay make a suggestion...Maybe if you create a thread in the welcome forum or somewhere else, and sticky a notice regarding the public nature of the forums, and the difference between posting vs. PM's, etc, and maybe stick a label on there to "read before creating a screen name, or making your first post", it might help the random fearfulness from overwhelmed people who may be too trusting or unaware of how these boards work?

That way, if and when the questions arise, you can just link to it, and CYA on the topic...  

 I can see where it could be easy for someone to get carried away and reveal too much private information to the world.  It's always best to have a disclaimer if possible.

I used facebook occasionally to see what my friends are doing but I told them all privately not to post anything on facebook indicating that I could have cancer.  That was because when I went to the bank for a loan to get money to pay my 15% of the insur,the bank form asked if I had ever been diagnosed with cancer or aids/hiv. If you answer yes,that bank wont give you a loan. Its a sad state of affairs when you cant be discriminated against for your race or religion but you can be discriminated against for your health!!

PLEASE NO MORE FORUMS OR STICKY THREADS!! Too many already.



I do have a comment about your TOS - in them you retain the right to reuse our material including for promotional purposes. If you really do intend to stop posting our threads elsewhere you should change that language - otherwise all we have is a gentleman's agreement and only for FB. With due respect you certainly have the right to expansive copyright but given this conversation it would be ethical to adjust the TOS accordingly.

Hi Athena, 

I understand your concern. We could certainly go over this with our lawyer again. We really have never used your threads/comments, except to show the value of the community (e.g. to board members, etc.). If we have taken a quote, we have never, ever used it without the consent of the individual.

Secondly, we are trying to reduce our sticky threads, slowly but surely. Every week we receive a request for either another sticky or new forum. Typically, we now need to apolgize and say "no", as we are on overload.

Again, we appreciate your constructive feedback. 

Your Mods 

We could all probably help with this too ... a heads up PM to somebody we see posting something that could personally identify them would be a nice thing to do.  I did it once when somebody posted a phone number. 

But I also believe that some people really don't care if they can be found on here either.  It's not like having breast cancer is something that has to be hidden from the world ... so it's all a matter of personal preference whether you want to display a real picture or pictures of yourself and family for instance.   

Lady,

the sense I got was that it was talking about " researchers" for different products and treatments mining the data, and following the conversations to see what issues were coming up in conversations, and how the issues were coming up in conversations.

data mining internet chats occurs on a variety of topics not just bc, and many of the players are willing to pay to get the information they want about how many times x subject comes up in conversation, and in what context. measuring internet chat on specific products is very important to manufacturers and marketers, but the gist of this article was on data mining internet chat boards for treatments for cancers, and specifically bc was mentioned.

I suspect data mining is a big business. the chat information is social feedback, and is valuable to people willing to pay money for it.

People certainly have the right to share  personal information on the internet. But if messages on discussion boards contain personal details such as photos, name, and medical history, people should not assume that third parties can not find that information, such as prospective employers, and insurance companies. It is all about choice and awareness.

People tend to get a false sense of security when the think that "data mining" by third parties is all about protecting their personal privacy.

Mods - this is not a comment against you but aimed to the attention of BOs your legal team:

That bit of language you offer above is useless and impossible to take seriously. I can't see a justification for the organization to even spend good dollars trying to enforce the unenforceable. You are almost saying "don't hack without our permission" - almost. It's like saying "don't enter my house and take my belongings without my permission." Doesn't pass the smell test.

Most importantly, it does nothing to address the concerns about BCOs control of our information. I still see the following language on your TOS (my bold) (Everyone else, go to where it says "Breastcancer.org Rules"):

"By using the Discussion Boards or Chat Rooms, you are granting Breastcancer.org a perpetual, exclusive, royalty-free and irrevocable right and license to use, reproduce, modify, adapt, publish, translate, distribute, transmit, publicly display, publicly perform, sublicense, create derivative works from, transfer, and sell any such messages, files or communications."

This language is still there, so I repeat my query: Given your decision to bow to concerns and withdraw our posts from Facebook, and given your concern over the uproar that ensued when this thread was created, how can the organization justify such expansive language?

Again, it's your right, but not ethical based on the discussion in this thread which, if you remember, was pretty explosive at times.

I cant believe where this conversation is going.  BCO is a public site.  When you post information on it, its PUBLIC.  BCO is responding by editing some of its privacy information details and members are assisting by offering to PM those who may be offering more information than may be safe.  Perfect combination.  Unfortunately, you cant save people from themselves.  Anything on the internet is PUBLIC.  Think of it this way, anything you post on a public site is similar to spray painting it on the Brooklyn Bridge.  If you not comfortable with your info on the Brooklyn Bridge, then dont post it!