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Medical privacy
A bill in Congress would make all states
protect patients’ confidentiality
by Bob Roehr
onfidential sessions with therapists,
others.”
“I do not want advancing technology to lead to
treatment for sexually transmitted
diseases, HIV test results— lesbians
a loss of personal privacy and do not want the fear
and gay men have long lived with the
that confidentiality is being compromised to deter
fear that personal medical informa
people from seeking medical treatment or stifle
tion could become public, and shatter their
lives.
technological
or scientific development,” Leahy
said.
We have been publicly humiliated, fired from
our jobs, denied insurance and medical treatment,
The core of the bill will establish a minimal
disowned by our families, and have even turned to
national standard for protecting the confidentiality
suicide when those records have become known.
of personal and identifiable health information.
Often there are no law protecting the privacy of that
It will limit primary use to’treatment and pay
most personal information, your medical records.
ment on a need-to-know basis. Secondary use for
A 1993 report by the congressional Office of
public health, research and cost-containment pur
Technology Assessment called the current system
poses would generally be restricted to a format
of protecting patient confidentiality “a patchwork”
stripped of personal identifiers such as names and
of codes, state and federal laws that “is inadequate
addresses.
to guide the health-care industry.”
Patients would be notified and asked for their
Several factors are working to multiply the
consent to any release of data. An electronic trail of
all those who access the data would be maintained.
inadequacy of regulations. One is the trend for
large corporations to run their own medical insur
The bill pre-empts much existing law but ex
ance programs rather than con
empts certain stronger state
tract outside. Another is com
laws (such as those regulat
pany “wellness programs.”
ing HIV disclosure in Cali
Both collect large amounts of
fornia and New York), the
medical and lifestyle data.
federal Alcohol and Drug
Often those data are not pro- ,
Abuse Act, the Americans
tected and are used for per- /
with Disabilities Act of
sonnel decisions such as pro- < ^
1990, and certain sections
motions and firings.
* fa ]
* 2 , \ of the Ryan White CARE
But even when programs J ^
Act.
are contracted out, employers « ^
It establishes the prin
often have access to employ- *4 V*,
ciple of “trusteeship” for
ees’ records. Janlori Goldman,
anyone who touches the
deputy director o f the Center
records, and levies both
for Democracy and Technol
civil and criminal penalties
ogy, calls it “intolerable to
for violation of confidenti
sa
support a system in which an
ality. One of its biggest
employer’s payment of a por
sticks is the power to ban
tion of an employee’s health-care premiums, a
participation in Medicare, Medicaid and other fed
normal part o f most American employees’ com
erally funded health programs.
pensation packages, amounts to employers con
It provides for patients’ access to their own
trolling their employees’ health records.”
health records and allows them to correct misinfor
The scattering o f paper records in thousands of
mation in those files.
physicians’ file cabinets seemed to offer some
The secretary of Health and Human Services
protection in the past, but an amalgamation of
will have six months from the date of passage to
individual records into massive national electronic
finalize regulations. The act will take effect six
data banks is raising warning flags. “Since 1988,
months after that.
the percentage o f health claims processed elec
Support for the concept of the legislation is
tronically has jumped from 8 percent to nearly 40
almost universal. Consumers want privacy protec
percent,” said Sen. Nancy Kassebaum (R-Kan.).
tion; industry above all else wants clear national
Her comment came in opening remarks at a
standards. But all parties are pushing for changes to
Nov. 14 hearing on a possible solution: the Medical
better reflect their interests.
Records Confidentiality Act of 1995 (S 1360).
Jeanne Schulte Scott, speaking for the Associa
The “Bennett-Leahy bill,” as it is commonly
tion for Electronic Health Care Transactions (the
called, is a strongly bipartisan measure. It has 17
data processing industry), said that current lan
initial co-sponsors and support of the leadership of
guage “does great harm to the health information
both parties in the Senate.
service industry.” She called for greater pre-emption
Sen. Robert Bennett (R-Utah) was appointed by
of state law and fewer “trustee” responsibilities for
Majority Leader Bob Dole (R-Kan.) to head up a
their members as subcontractors.
task force on health-care reform. “It startled me to
The American Hospital Association questioned
leam that the average American has more control
whether HHS should administer the act: “HHS, as
over and access to his or her credit information than
a payer and administrator of health services, would
to his or her medical information,” he said.
also be subject to the requirements of this act. The
Fourteen states have absolutely no privacy pro
dual role of regulator and regulated appears to be a
visions for medical records, and protection in the
conflict of interest.”
others is spotty. Only 28 states allow patients to
Aimee Berenson, of the AIDS Action Council,
even view their own records, fewer still allow
recommended tightening access to medical files
corrections of inaccurate information.
for research purposes to “research conducted at
Bennett believes those differences make no
qualified medical facilities and institutions.” She
sense in a time when “medical records are gallop
offered the model of regulations governing bio
ing toward the electronic age, crossing state lines
medical research funded by the National Institutes
literally with the speed of light.”
of Health.
Sen. Patrick Leahy (D-Vt.) called the right to
She also wants the bill to “set out clear proce
privacy “one of our most cherished freedoms— it is
dures for objecting to the release of medical records
the right to be left alone and to choose what we will
in civil litigation.”
reveal o f ourselves and what we will keep from
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