real example of privacy violation (fwd)

[Peter Marshall <rocque@eskimo.com>]

---------- Forwarded message ----------
Date: Sat, 3 Aug 1996 07:22:14 -0700 (PDT)
From: MichaelP <papadop@PEAK.ORG>
Reply-To: privacy@ftc.gov
To: privacy@ftc.gov
Subject: real example of privacy violation

>From SF Chron. August 3   
   
   
   
   
   POZ, which calls itself ``the magazine by and about people whose lives
   are affected by AIDS,'' has been hit by a subscriber revolt involving
   the magazine's sale of its mailing list to commercial marketers.
   
   The dispute highlights growing tension between profit-making
   businesses that focus on the AIDS community and long-standing privacy
   concerns among those who are HIV positive.
   
   Although it is common practice for magazines to rent subscriber lists,
   some AIDS groups and gay- oriented publications say they either refuse
   to give out anyone's name or give names only to nonprofit
   organizations.
   
   POZ, a glossy for-profit publication founded in New York 2 1/2 years
   ago, claims about 30,000 paid subscribers out of a total circulation
   of about 80,000. Its pages are filled with ads from drug makers, life
   insurance concerns and AIDS- related service providers.
   
   The POZ controversy flared up this week when a Minneapolis subscriber
   posted a blistering complaint on a popular AIDS-oriented computer
   bulletin board on the Internet.
   
   The subscriber, Matt Butts, 35, said he became upset when he received
   an unsolicited brochure in the mail from a company touting
   life-support systems for people unable to eat normally.
   
   He called the advertiser, SIMS Deltec of St. Paul, Minn., and was told
   that POZ had given out his name and address.
   
   Butts, who canceled his subscription, used a pseudonym on the Internet
   posting but gave his real name yesterday during a telephone interview.
   
   
   ``I felt betrayed,'' said Butts, who is HIV-positive. ``These people
   are putting out this magazine under the guise of community service,
   but they're really just another huckster trying to make a buck out of
   the fact that I have an incurable disease.''
   
   He said his Internet posting generated about a dozen e-mail responses
   from around the country, ``all but two from people just as irate'' as
   he was.
   
   Butts, medical-records transcriber, likened the POZ subscription list
   to ``implied medical information'' concerning people's HIV status.
   
   But POZ founder Sean O'Brien Strub said POZ subscribers are not
   necessarily infected with the virus and that the magazine never
   discloses anyone's HIV status. It uses revenues generated by the
   mailing-list rentals to help subsidize a free-subscription offer to
   low-income HIV-positive individuals.
   
   POZ subscription cards disclose that subscriber names and addresses
   may be given out and also have a box subscribers can check if they
   don't want their names distributed. Strub said only about 5 percent of
   the magazine's subscribers have asked that their names be withheld.
   
   However, POZ also solicits subscriptions through a toll-free 800
   number. Calls to the phone-in service yesterday revealed that clerks
   do not explain the mailing-list rental policy unless the caller first
   brings it up.
   


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