[Med-privacy] med-privacy rules
Peter Marshall
techdiff@ix.netcom.com
Sun, 20 Aug 2000 10:54:43 -0700
8/20/00
U.S. Toughens Rules on Medical Privacy, but
Some Want More Limits
By ROBERT PEAR
WASHINGTON, Aug. 19 -- After=
nine
months of blistering critici=
sm from
doctors, patients and consum=
er
groups, the Clinton administration says it has=
decided to beef up protections for the privacy=
of
medical records, beyond what it proposed last =
year. =
But administration officials said the new rule=
s, to
be issued before the Nov. 7
election, would not give patients full control=
of
their medical records, as many
advocates of privacy rights had recommended. =
The rules would, for the first time, set
comprehensive federal standards
requiring doctors, hospitals, pharmacists and
insurance companies to limit the
disclosure of medical information about indivi=
dual
patients. =
The health care industry and insurance compani=
es
must comply with the new
rules within two years. The rules, issued unde=
r a
1996 statute, would have the
force of law; no further action by Congress is=
required. =
The far-reaching, complex rules will touch alm=
ost
every aspect of the health
care system. They will come at a time when lar=
ge
amounts of medical data,
including genetic information about a patient'=
s
risk of developing specific
diseases, can be stored electronically and sen=
t
across the country or around the
world with the click of a computer mouse. =
Administration officials said they saw publica=
tion
of the rules as a significant
achievement that could help Vice President Al =
Gore,
the Democratic candidate
for president. Mr. Gore has called for an
"electronic bill of rights" to protect
people against the misuse of computerized pers=
onal
information of all types. =
Chris Jennings, the health policy coordinator =
at
the White House, said
President Clinton was committed to issuing the=
rules on medical privacy by
late summer or early fall. "That's a very high=
priority," Mr. Jennings said. =
Public opinion polls show that Americans are
increasingly concerned about
privacy in general and want greater protection=
for
medical records, in
particular. Some people say they shun testing =
for
cancer, H.I.V. infection and
other conditions because they fear discriminat=
ion
in insurance or employment.
The Republican Party platform promises new rul=
es to
protect the privacy of
medical information, but gives no details. If =
Gov.
George W. Bush of Texas
wins the presidential election, his advisers s=
aid,
he would probably want to
re-examine the rules, rather than rely on the
policy judgments of the Clinton
administration. =
The White House published the proposed rules i=
n the
Federal Register on
Nov. 3, 1999. After reviewing thousands of pub=
lic
comments, federal officials
said, they expect to make these changes: =
=B6The rules, as originally proposed, would ha=
ve
applied mainly to information
transmitted electronically or stored in comput=
ers.
The final rules will also
apply to many paper records. This is an import=
ant
change because most
medical records are still kept on paper. =
=B6Under the proposed rules, health care provi=
ders
and insurance companies
were supposed to advise patients of their righ=
ts
and tell them how personal
medical information might be used or disclosed=
=2E The
new rules are likely to go
further, stipulating that doctors should get
patients to sign forms
acknowledging that they have actually received=
such
notices. =
=B6The proposed rules would have permitted the=
use
and disclosure of medical
information without a patient's consent for
treatment, payment and a wide
range of loosely defined "health care operatio=
ns."
They would also have
prohibited doctors from asking patients to sig=
n a
consent form unless it was
required by state law. The new standards will =
allow
doctors to seek the patient's
consent, and many doctors said they had an eth=
ical
obligation to do so. =
Under current practice, doctors often ask pati=
ents
to sign forms authorizing the
use and disclosure of medical information for
various purposes. =
The American Civil Liberties Union said, "The
proposed regulations are a step
backward from current practice because they re=
quire
only notice and not
consent." =
Administration officials said the new rules wo=
uld
limit disclosure of medical
information to the "minimum necessary" and giv=
e
patients a right to see their
medical records. In addition, the rules would
pre-empt weaker state laws. =
A person who discloses health information in
violation of the rules could be
fined $50,000 and imprisoned for one year. If =
the
offense is committed for
commercial advantage or personal gain, the rul=
es
allow tougher penalties: a
$250,000 fine and 10 years in prison. =
The 1996 law directed the administration to is=
sue
rules on medical privacy if
Congress failed to pass legislation by Aug. 21=
,
1999. =
Lawmakers missed that self-imposed deadline.
Congress could alter any of the
new standards, but has been at an impasse, und=
er
pressure from scores of
lobbyists with conflicting interests on the is=
sue
of medical privacy. =
Robert M. Gellman, an expert on privacy and
information policy, said the
administration was "taking a real gamble" in
issuing the rules before the
election because they might be criticized as n=
ot
going far enough to protect
privacy. =
On the other hand, the Health Insurance Associ=
ation
of America and the Blue
Cross and Blue Shield Association said the pro=
posed
rules went too far,
exceeded the government's legal authority, wer=
e
unworkable and would
impose new costs on patients and employers, wh=
o pay
for much of the nation's
health care. =
When the rules were proposed last year, they w=
ere
praised at first, but then
criticized by the American Medical Association=
, the
American Civil Liberties
Union and experts like Janlori Goldman, direct=
or of
the Health Privacy Project
at Georgetown University. =
After reading the fine print, critics said the=
proposals were a license to disclose
sensitive medical information, rather than a f=
ence
restricting access. =
In a typical comment, the American Cancer Soci=
ety
said it was concerned that
the proposed rules would allow "the total free=
-flow
of information" without
input from patients. =
"We believe that the individual should retain =
the
ultimate right to decide to
whom, and under what circumstances, individual=
ly
identifiable health
information will be disclosed, even in cases o=
f
treatment, payment or health
care operations," the cancer society said. =
Likewise, the American Medical Association sai=
d,
"Valid consent should be
obtained before personally identifiable health=
information is used for any
purpose." =
=
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