Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of the Brain Injury Network Policy dated 12-11-10 Privacy Settings on Web Sites Designed for Brain Injury Survivors: Websites often have several privacy settings ranging from totally open access (in which case all content can be viewed by third parties) to private access (in which case no third party is supposed to be able to view content). Sites catering to people with brain injuries ought to have their privacy setting defaults set to maximum privacy. Then, if the survivor wants to change the setting to less privacy he or she can take steps to accomplish that.
Many people and organizations that are starting up online groups for people with brain injury do not know about the privacy settings, etc. Administrators in online communities in places like Facebook and Yahoo Groups have the capacity to set more private settings on behalf of all of the participants, but most do not do so. By and large, unfortunately, privacy defaults are generally “open access”. The open access setting (share all content with third parties, etc.) is the one that most compromises privacy.
Some websites purposely do not offer any privacy options at all to the user, and these types of sites probably ought to be avoided as a general rule, because chances are the web administrator is allowing total open access to all third parties. Also, chances are that the site is also archived in Google and other search engines. This means the content posted by participants will be public and what is more will be stored in a public archive that may be on permanent view.
Web sites that offer several privacy settings to the user with one setting to maximum are to be commended, but only if the default is the maximum privacy setting. If the default setting is one that permits open access and third party (stranger) viewing, but additional settings that offer more privacy, that is not good enough. Yes, the participant may, at his or her discretion, change the privacy setting to more privacy but that is insufficient, because some people with brain injuries are not going to realize that they ought to set privacy to a higher level for their own protection. Also, certain people with brain injuries may not be able to figure out the steps they must take to make their participation more private. Therefore the best site is the one that starts with the privacy settings already set by default to maximum privacy. Maximum privacy does not permit third parties to view participant’s content. Maximum privacy default settings best protect the site user from hackers, identity thieves, spammers and other third parties who really have no business snooping into the private affairs and personal data about people.
Site administrators should do everything possible to minimize potential security threats to their participants. Maintaining maximum privacy default settings for site users is one thing caring and responsible site administrators can furnish if they operate online brain injury social support communities.