Date: Thu, 29 Mar 2001 00:51:07 -0500 (EST)
Message-Id: <200103290551.AAA22948@mattababy.mit.edu>
From: belmonte@mit.edu (Matthew Belmonte)
To: CapuanoHR8@aol.com (Mike Capuano)
Subject: proposed medical privacy regulations, 45 CFR Parts 160 through 164
Cc: hhsmail@os.dhhs.gov (Tommy Thompson)

To: Representative Michael Capuano <CapuanoHR8@aol.com>
Cc: Tommy Thompson, Secretary of Health and Human Services <hhsmail@os.dhhs.gov>
Re: proposed medical privacy regulations, 45 CFR Parts 160 through 164

Dear Representative Capuano

As your constituent, and as a biomedical scientist who has witnessed abuses of
medical records, I urge your support for H.J. Res. 38, a bill that would
prevent implementation of the so-called `medical privacy' rules that appeared
in the Federal Register (45 CFR Parts 160 through 164) on 28 December and
which are currently due to take effect on 14 April.  While perhaps well
intentioned, these rules create vast opportunities for systematic breaching of
medical records privacy in the long term.

The proposed rules mandate that all health care providers submit their
patients' records to the Department of Health and Human Services and other
selected federal agencies, without necessarily having the consent of the
individuals to whom the records pertain.  The American Association of
Physicians and Surgeons opposes these proposed rules, observing in a March 26th
letter to HHS Secretary Tommy Thompson that the rules would `enable if not
guarantee wholesale invasions of privacy.'  The proposed rules even go so far
as to preempt state laws giving individuals greater access to their own
records.

A fundamental tenet of biomedical research is the doctrine that no individual
or institution may perform research on human subjects without obtaining
informed consent from those subjects or from their legal guardians or
representatives.  The proposed rule would exempt the federal government and its
agents from this fundamental standard of morality in the sharing of biomedical
information.  This is an extremely disturbing precedent.  Patients should be
informed of any request to release their medical records, and given the
opportunity to opt out of such releases.  Patients should not be forced to
forego medical treatment in order to maintain their privacy, and no institution
-- including the federal government -- should have a greater right of access to
patients' records than the patients themselves have.