Re: S.1360 mark-up postponed

[James Love <love@Essential.ORG>]

  On Mon, 22 Apr 1996, Janlori Goldman wrote:
  > CDT opposes any weakening of the current version of S.1360.  CDT is
  > organizing a letter of support for the Bennett-Leahy bill, to be signed by
  > a wide variety of consumer, privacy and patient advocates, as well as
  > health care providers, researchers, employers, and information technology
  > companies.
  
     Count us out.  The new version of S. 1360 isn't much different from 
  the first version.
  
  > CDT believes that the new version is significantly stronger.
  > The revised
  > Bennett-Leahy bill incorporates many of the key changes 
  > recommended by CDT  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.
  
             Well, Janlori, are you saying that any of these groups endorse 
  the new version of the bill?  Has AARP taken a position?  Are Public 
  Citizen, ACLU and EPIC on board?
  
  
  > 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.
             Not true......   The pre-emption sections are extremely 
  broad.  Indeed, much different from the pre-emption sections now in the 
  health bill, or under the medical privacy coalition proposal.
  
  > 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.
  
            People will mostly have the ability to sign forms giving 
  insurance companies, employers, schools and other consent for access to 
  their records.
  
  > 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 
  > researchers.  
  
  
            the "equifax" provision for non-identified data is still in 
  the bill, it was just moved to a new section.  201 (c) (2).
  
            Nothing in the new section 208, "Health research," requires 
  consent or notice.  The identified records don't even have to be 
  destroyed.
  
  >  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. 
  
                A contractor?  Equifax will be one of those contractors....
  
  > 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. 
  
               Why would that be, since access to the identified records 
  will be so great?
  
  >  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.
  
                  "clear and convincing" what?  "clear and convincing that 
  the evidience is "relevant."  No front end protections, such as were 
  recommended by the Medical Privacy Coalition proposal.
  
  
   jamie
  
  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
  James Love / love@tap.org / P.O. Box 19367, Washington, DC 20036
  Voice: 202/387-8030; Fax 202/234-5176
  Center for Study of Responsive Law
     Consumer Project on Technology; http://www.essential.org/cpt
     Taxpayer Assets Project; http://www.tap.org
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