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JRI Health on New S. 1360 - Sign-On Letter
The following is a letter that is being circulated by the JRI Health Law
Institute expressing objections to the new draft of S. 1360. If you have
questions, or want to sign on, contact A.G. Breitenseten, at the address
below. A.G. also has a copy of a draft bill on medical records privacy
which was put together for the Medical Privacy Coalition.
A.G. Breitenstein, Director, The JRI Health Law Institute
130 Boylston Street, Boston, MA 02116
Voice: (617) 457-8150, Fax: (617) 457-8133, E-mail: firstname.lastname@example.org
April 23, 1996
The Honorable Nancy Landon Kassebaum
United States Senate
302 Russell Senate Office Building
Washington, D.C. 20510
Dear Madam Chairman:
Having reviewed the changes of S.1360 submitted on 4/10/96, it is
evident that a commendable debate has begun with regard to what is truly
necessary to protect patient confidentiality. We would like to thank the
Committee and their staff for the work that has been dedicated to this
draft. It is clear, however, that the debate that has been set in motion
must continue if we are to achieve the laudable goals articulated in the
bill's purpose. We still oppose the draft of the bill in its current
form. Although some changes have been made, many key issues remain
unaddressed. We believe that the changes that have already been suggested
in the Medical Privacy Coalition's discussion draft embody the full
potential of S.1360 and we urge the committee to adopt them as fully as
As a general matter, the revised provisions of S.1360 do not
consistently adhere to the fundamental principles on which any medical
privacy bill should be based:
Right to Privacy - Individuals have a right to privacy with respect to
their personal medical information;
Informed Consent - An individual's right to privacy cannot be waived
unless that individual is afforded meaningful notice and informed consent;
Compelling Public Interest - In the absence of an informed consent, an
individual's right of privacy with respect to personal medical information
shall not be eliminated or limited except in circumstances prescribed by
statute where there is an overwhelming and compelling public interest.
As we have previously stated, preservation of the right to privacy for
personal medical information is essential to quality medical care. If
patients cannot communicate in confidence with their treating physician
(or other health care giver), the physician will not be able to obtain the
information that is needed for effective diagnosis and treatment. Thus,
protection of the right to privacy is crucial to preservation of the
physician/patient relationship which is the cornerstone of our health care
Flowing from this understanding, we would like to raise the following
Stricter limits must be placed on insider access.
-A trustee should not be able to condition employment or services
on the receipt of an authorization for use and/or disclosure of health
-Patients should be given a specific list of those individuals
within a trustee who will have access to their health information and be
able to control who may appear on that list.
-Patients should have full knowledge of a trustee's use of an
-All trustees, including health care providers, should maintain a
readily understandable audit trail of disclosures.
Longitudinal health databases should not be allowed without consent.
-No patient should be forced to have their information placed in a
longitudinal database without their consent.
-The only possible exception we would consider would be where pure
research were being performed and where the patient has the opportunity
and absolute ability to "opt out" of such research.
No Health Information should be disclosed or used without the Informed
Consent of the Patient.
-True informed consent appears nowhere in the current draft. Not
only must this concept be included, but further procedural safeguards and
notice requirements must be incorporated to support such consent. Again
we refer to the specific suggestions made in the Medical Privacy
Coalition's discussion draft.
-The purpose for any use or disclosure must be specified in any
consent signed by an individual.
Stronger state laws should not be prohibited.
-The current draft still preempts state law. We would strongly
urge the removal of this section as no federal law should ever serve as a
ceiling for protective state action. Further, the current language allows
weaker laws that "regulate" public health and mental health to
remain. This would allow worse state laws to remain and preempt the
addition of better laws. This is a loss, even from the earlier draft of
Specific conditions for access to identifiable health information must be
set out for health insurers, oversight and public health officials,
researchers, accreditation agencies, and in emergency circumstances.
-The current provisions simply allow full access without
restriction. These entities must have a compelling public purpose to
access health information without consent. The Coalition set out very
specific requirements for each of these entities in its discussion draft.
Limitations on law enforcement access must be appreciably strengthened.
-Although a clear and convincing standard has been added, it is
still only with regard to the "relevance" of the information. The
standard should be "clear and convincing evidence that the information is
necessary." In addition, the Medical Privacy Coalition suggested a number
of procedural safeguards, such as a requirement that a party seeking
health information provide the court with a proffer of evidence specifying
the grounds for such an inquiry and review of information at the court.
These suggestions among others are very important to protecting privacy.
The above should not be regarded as an exhaustive list of the concerns held
by the undersigned. The Medical Privacy Coalition's discussion draft
submitted to the Committee most fully details the suggestions we hope to see
incorporated into the final version of the bill. This letter is, however,
intended to address our major concerns. With that said we recognize that a
variety of both good and bad alternatives to S.1360 are currently being
considered by Congress. We would very much hope that the debate continues
within the framework that has been created by S.1360.
We will support of a modified version of S.1360 if the Committee will commit
to correcting the outstanding deficiencies noted above. We would like to
reiterate that we feel that the work that has been done thus far has
contributed to the creation of a robust debate about what should be done to
protect the privacy of patients.
We look forward to a continued discussion of the very vital issues described
(Signatories as of 4/23/96)
Denise Nagel, MD
Director, Medical Confidentiality Project of the Coalition for Patient Rights
Director, JRI Health Law Institute
cc: The Honorable Robert Bennett
The Honorable Edward Kennedy
The Honorable Patrick Leahy
A.G. Breitenstein, Director, The JRI Health Law Institute
130 Boylston Street
Boston, MA 02116
Voice: (617) 457-8150
Fax: (617) 457-8133
JRI on the Web: http://www.jri.org/jrihealth
HIV InfoWeb: http://www.jri.org/infoweb