At least 135 respondents to a controversial new website for HIV-positive people had their e-mail addresses broadcast across the country last month.
“More than anything I feel betrayed. It’s certainly not anything I expected,” says Harlon Davey, whose full name appears on his e-mail address. “When I signed up [at the website], I thought it was confidential. All of a sudden I feel exposed. I really have to question their ethics and their integrity.”
Davey’s electronic address was included, with 134 others, as a “cc” (or carbon copy) on an e-mail from the website www.hivnews.com.
This reporter’s e-mail address was also among the 135.
Hivnews has placed several full page advertisements in this publication, Capital Xtra in Ottawa, Xtra West in Vancouver and in Fab National.
Ironically, the company’s web “title page” states the site “is to cater to your needs. We are enriching the communications of people living with HIV. Under no circumstance will your information be distributed or sold.”
Some of those listed will undoubtedly be HIV-positive – and have been “outed.”
Dave Doig of the AIDS Committee Of Toronto is angry. It’s “a gross violation… to keep the information they collect confidential and secure. It strengthens our concerns and suspicions about whether the people involved with the site know what it takes to build and manage a web site that meets the needs of HIV-positive people.”
ACT will ask those involved “to stop collecting people’s names and e-mail addresses until they have proven security measures in place.”
The error “is a very serious mistake,” allows Bijan Kotabi, whose fledgling Toronto company, Kotabi Advertising Ltd, has now put its name to the website. (For many weeks, there was no identifying information, which raised the suspicions of many AIDS service organizations.)
It’s the second serious gaffe by Kotabi, who claims no previous history with the AIDS community, but who boasts among his clients DuPont Pharma, the Canadian subsidiary of the manufacturers of Sustiva, a new AIDS drug.
When he first started the site, Kotabi requested that interested
parties – HIV-positive people – provide their first and last names, and addresses. He backed off quickly when Doig protested
“That this has happened again so soon into the life of the site confirms our worst fears,” says Glen Hillson, chair of the BC Persons With AIDS Society.
“We don’t know why they are doing what they are doing; but it is clear that they don’t have the wit to do something as fundamental as protect people’s confidentiality. People should be aware that the Internet is a wild west frontier. You have very little protection even if they [any site] says they have a policy to respect confidentiality.”
The 135 names represent “one of the data bases” of respondents to the site, says Kotabi. The site received only two complaints about the breach, he adds, and the staffer who made the error was not fired.
Through payment to a US firm, Kotabi Advertising has bought the rights to more than 20 site names, including Hivchat.com, Hivchat.net, Hivtalk.com and Hivdrugs.com. In an interview, Kotabi said he purchased the rights to these site names to “use them as a pointing system, to direct people to our website… the cost [of each
name] is about $70 each.”
Some companies reserve website names, then lease them to interested parties for a hefty fee.