From: David Banisar <cpsr@access.digex.net>
Date: Tue, 20 Sep 94 06:31:04 PDT
To: medical-list@epic.org
Subject: Patient Privacy at Risk (FWD)
Message-ID: <9409200930.AA07362@Hacker2.cpsr.digex.net>
MIME-Version: 1.0
Content-Type: text/plain


Fwd from the Coalition for Patient Rights (CPRMA@aol.com)


                                 Alert
                          
                         Patient Privacy at Risk
                            Contact the ACLU


The ACLU appears on a list of endorsers of the Wofford/Dodd amendment
which amends one of the Senate health care reform bills.  Major
portions of W/D would have a severely adverse impact on the
confidentiality of medical records.  Although W/D has been rendered
partly obsolete as newer health care reform bills are advanced under
new names and new coalitions, many of its principal features remain
intact in the new bills.  It has become a reference point.  It is for
this reason that the signature of the ACLU on a list of endorsers of
W/D (on a document entitled "Wofford/Dodd Fact Sheet") is so
troubling and so damaging.

The amendment creates federal standards for the disclosure of
personally identifiable health care information and establishes a
framework for a national health care data network.  On the surface,
the goals seem good. Who wouldn't be for establishing strict federal
guidelines to ensure privacy where none existed before?  For that
matter, why not support a data network that would allow a treating
physician to have immediate access to all pertinent medical
information?

Clearly we have to look beyond the advertisement and into the details
of the bills for the answers to these questions.  For example, in
Sec. 508(a) of Mitchell 3 (the bill offered by the Senate majority
leader), the "health information network service" is made the agent
of the provider.  This means that once a third party bureaucratic
agency receives the information electronically, it is deemed the same
as the health care provider in making decisions about the release of
the information.  Sensitive medical information, including intimate
psychological information, would be available electronically to an
increasing number of people legally--not to mention the
well-documented risks of illegal access.  Among those with enhanced
access would be law enforcement officials and government agencies.
Even researchers could access personally identifiable health
information, if an institutional review board holds that the project
is "of sufficient importance to outweigh the intrusion into the
privacy of the person who is the subject of the information."  The
patient has no right to refuse such disclosure even though it
includes his or her name.

There are many examples of person-identified medical information,
including sensitive personal information, that have been shared with
health care providers with the expectation of privacy that would now
be legally accessible to many third parties.  The argument is made
that this kind of access already exists, so why not codify it.  The
logic is faulty.  It is true we already have serious problems
protecting the privacy of medical records in this country.  Legally
sanctioning medical access to an ever enlarging list of third parties
is not the solution.  It will only compound an already serious
problem.

A compelling argument has been made that the establishment of a
national health care data network that requires all providers to
disclose information about every patient contact would violate the
Fourth Amendment's prohibition of "unreasonable searches and
seizures" of the person.  Many organizations have raised serious
concerns about Wofford/Dodd, including the American Psychiatric
Association, the American Psychoanalytic Association, Coalition for
Patient Rights, National Organization of Women, and the AIDS Action 
Council.

We hope that the ACLU joins us in support of genuine privacy
legislation. We hope that there was an error when it appeared on a
short list of supporters of Wofford/Dodd (June 10, 1994)

Call your state chapter of the ACLU.  It is listed as Civil Liberties
Union of (your state) in the white pages.  Let them know of your
concern.If possible, also fax Laura Murphy Lee at the ACLU in
Washington (202-546-0738) and let her know your concern regarding the
position of the ACLU in supporting W/D.

This alert is provided by the Coalition for Patient Rights,
Massachusetts (617, 433-0114).