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Re: S.1360 mark-up postponed
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
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
> 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
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
> 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.
James Love / email@example.com / 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