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real example of privacy violation (fwd)
---------- 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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