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CDT Policy Post 2.14 - Key Senators Strengthen Medical Privacy Bill: Mark-up Setfor April 24

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    The Center for Democracy and Technology  /____/     Volume 2, Number 14
       A briefing on public policy issues affecting civil liberties online
   CDT POLICY POST Volume 2, Number 14                          April 12, 1996
  CONTENTS:   (1) Key Senators Strengthen Medical Privacy Bill:
                  Mark-up Set for April 24
                  (2) Subscription Information
                  (3) About CDT, contacting us
  This document may be redistributed freely provided it remains in its entirety
         ** Excerpts may be re-posted by permission (editor@cdt.org) **
  (1) Key Senators Strengthen Medical Privacy Bill: Mark-up Set for April 24
  Today, Senators Nancy Kassebaum (D-KA) and Edward Kennedy (D-MA) released a
  stronger, more privacy-sensitive rewrite of the Medical Records
  Confidentiality Act (S.1360), also known as the Bennett-Leahy bill after
  its chief sponsors. The bill is scheduled to be considered by the full Labor
  and Human Resources Committee on April 24. If the Committee approves the bill,
  S.1360 will be ready to be voted on by the full Senate in the coming months.
  The revised Bennett-Leahy bill incorporates many of the key changes
  recommended by CDT (see CDT policy post March 19, 1996) and members of a
  CDT-led coalition, including AIDS Action Council, the Legal Action Center,
  the Center for Patients' Rights, IBM, AARP, the American Hospital
  Association, and the Association of Academic Health Centers. In addition, the
  bill includes revisions suggested by Public Citizen, the Coalition for
  Patient's Rights, the ACLU, and EPIC.
  In its current form, CDT believes that S.1360 is an extremely strong and
  enforceable medical privacy bill, which would give people the right to see
  their own records, prohibit disclosures of most personal medical data without
  the patient's consent, and bring heavy criminal and civil penalties to bear
  on those who violate the law. The revised S.1360, like its predecessor, is
  more stringent than any medical records privacy law currently on the books at
  either the state or federal level. If passed, the Bennett-Leahy bill will
  give people the greatest degree of control over the use and disclosure of
  their personal medical data. CDT hopes that the Senate Labor Committee will
  unanimously approve the amended S.1360.
  Significant changes to S. 1360 include:
   o  A new section has been added to S.1360 that lays out the principles
  underlying the bill, including that people have a right of confidentiality
  in their medical records that is being eroded, and that such erosion may
  jeopardize the quality of health care by reducing peoples' willingness to
  confide in their doctors.
   o  The revised S.1360 narrows instances under which protected health
  information may be disclosed without the individual's consent. Under S.1360
  as introduced, a number of disclosures of personal health information were
  allowed without the individual's consent, such as to researchers and for
  the purpose of creating nonidentifiable data. Both of these exceptions to
  consent have been eliminated. S.1360 now requires researchers who want
  access to identifiable data to get the record subject's consent, unless
  they can meet a waiver standard already in place for federally funded
   o  The revised S.1360 removes "health information services" from being
  treated as trustees, and now only allows them to receive personal health
  information with an individual's consent. Now, trustees, such as doctors,
  hospitals, and insurance companies, must anonymize personal health
  information prior to disclosing it to health information services, such as
  EDS or Equifax. A health information service may only strip the identifiers
  if they are under the control of a trustee as an employee or contractor.
  This change is a major improvement in the bill, which will significantly
  limit the number of people who get access to sensitive medical data.
  Overall, the bill creates a big incentive to use health data in
  nonidentifiable form.
   o  S.1360 now includes a higher "clear and convincing evidence" standard
  that law enforcement must meet before a warrant can be issued for access to
  personal medical information.
   o  S.1360 has now been narrowed by clarifying that insider access to medical
  records must be limited. The bill now states explicitly that internal
  disclosures of personal health information must be compatible with and
  directly related to the purposes for which the information was collected.
  For more information on the Medical Records Privacy legislation, including
  the text of the S.1360 as introduced and as revised (once it is made
  available), CDT's recommended changes to S.1360, CDT's testimony before the
  Senate Labor and Human Resources Committee, and other relevant information,
  visit CDT's Health Information Web Page at:
  For additional information contact
  The Center for Democracy and Technology    +1.202.637.9800
          Janlori Goldman, Deputy Director
          Deirdre Mulligan, Staff Counsel
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  End Policy Post 2.14                                           4/12/96