She believes our culture is undergoing a
kind of mass identity crisis, trying to hang on to a sense of
privacy and intimacy in a global village of tens of millions.
"We have very unstable notions about the boundaries of the
individual," she says.
If things seem crazy now, think how much crazier they will be
when everybody is as wired as I am. We're in the midst of a
global interconnection that is happening much faster than
electrification did a century ago and is expected to have
consequences at least as profound. What would happen if all the
information stored on the world's computers were accessible via
the Internet to anyone? Who would own it? Who would control it?
Who would protect it from abuse?
"What's gone out of whack is we don't know who knows about us anymore. Privacy
has become asymmetrical." -- Kevin Kelly, executive editor of Wired Magazine.
Small-scale privacy atrocities take place every day. Ask Dr.
Denise Nagel, executive director of the National Coalition for
Patient Rights, about medical privacy, for example, and she
rattles off a list of abuses that would make Big Brother blush.
She talks about how two years ago, a convicted child rapist
working as a technician in a Boston hospital riffled through
1,000 computerized records looking for potential victims (and
was caught when the father of a nine-year-old girl used caller
ID to trace the call back to the hospital). How a banker on
Maryland's state health commission pulled up a list of cancer
patients, cross-checked it against the names of his bank's
customers and revoked the loans of the matches. How Sara Lee
bakeries planned to collaborate with Lovelace Health Systems, a
subsidiary of Cigna, to match employee health records with
work-performance reports to find workers who might benefit from
antidepressants.
Not to pick on Sara Lee. At least a third of all FORTUNE 500
companies regularly review health information before making
hiring decisions. And that's nothing compared with what awaits
us when employers and insurance companies start testing our DNA
for possible imperfections. Farfetched? More than 200 subjects
in a case study published last January in the journal Science
and Engineering Ethics reported that they had been discriminated
against as a result of genetic testing. None of them were
actually sick, but DNA analysis suggested that they might become
sick someday. "The technology is getting ahead of our ethics,"
says Nagel, and the Clinton Administration clearly agrees. It is
about to propose a federal law that would protect medical and
health-insurance records from such abuses.
But how did we arrive at this point, where so much about what we
do and own and think is an open book?
It all started in the 1950s, when, in order to administer Social
Security funds, the U.S. government began entering records on
big mainframe computers, using nine-digit identification
numbers as data points. Then, even more than today, the
citizenry instinctively loathed the computer and its injunctions
against folding, spindling and mutilating. We were not numbers!
We were human beings! These fears came to a head in the late
1960s, recalls Alan Westin, a retired Columbia University
professor who publishes a quarterly report Privacy and American
Business. "The techniques of intrusion and data surveillance had
overcome the weak law and social mores that we had built up in
the pre-World War II era," says Westin.
The public rebelled, and Congress took up the question of how
much the government and private companies should be permitted to
know about us. A privacy bill of rights was drafted. "What we
did," says Westin, "was to basically redefine what we meant by
'reasonable expectations of privacy'"--a guarantee, by the way,
that comes from the Supreme Court and not from any
constitutional "right to privacy."
The result was a flurry of new legislation that clarified and
defined consumer and citizen rights. The first Fair Credit
Reporting Act, passed in 1970, overhauled what had once been a
secret, unregulated industry with no provisions for due process.
The new law gave consumers the right to know what was in their
credit files and to demand corrections. Other financial and
health privacy acts followed, although to this day no federal
law protects the confidentiality of medical records.
As Westin sees it, the public and private sectors took two very
different approaches. Congress passed legislation requiring that
the government tell citizens what records it keeps on them while
insisting that the information itself not be released unless
required by law. The private sector responded by letting each
industry--credit-card companies, banking, insurance, marketing,
advertising--create its own guidelines.
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