RE: Washington bill

["Toxic Discovery Network, Inc." <ToxicDiscovery@email.msn.com>]

Mr. Marshall,

Would you be so kind as to forward information about your organization for
our review.

Sincerely,

Kathy Keithley Johnston, R.N.
President/Medical Director
Toxic Discovery Network, Inc.
1906 Grant Lane
Columbia, Missouri 65203

Phone: (573) 445-0861
Fax: (573) 445-8539
E-Mail: ToxicDiscovery@msn.com
Publication: "The Toxic Journal" & The Toxic "Net" News

"The National Organization of 'People Helping People'

=======================================================

-----Original Message-----
From: med-privacy@essential.org [mailto:med-privacy@essential.org]On
Behalf Of Peter Marshall
Sent: Monday, April 12, 1999 4:00 PM
To: Multiple recipients of list MED-PRIVACY
Subject: Washington bill



 SB 5482 Medical records - data bases
 Thursday, 04-Feb-99

      SENATE BILL REPORT
      [www.leg.wa.gov]

      SB 5482

      February 2, 1999

      Title: An act relating to the use of state data bases for
      institutionally reviewed medical and health research.

      Brief Description: Regulating disclosure of medical and health
      research records.

      Sponsors: Senators Thibaudeau, Deccio, Costa, Rasmussen and
        Winsley.


      SENATE COMMITTEE ON HEALTH & LONG-TERM CARE

Background: Nonprofit organizations performing health or medical
research like the Fred Hutchinson Cancer Research Center are
concerned about their access to vital statistic information given
recent federal legislation such as the Driver's Privacy Protection
Act, which may restrict access to personal identifying information.

Researchers advocate the necessity of personal statistical
information for research purposes. Apparently some studies require
accurate tracking of an individual, which sometimes can only be
accomplished with descriptive vital statistic information.

Currently, various laws protect against disclosure of private or
confidential information from public agencies. Specific identifying
information like vital statistics are often protected, particularly
if attached to a name.

For example, the Bureau of Statistics under the Secretary of State is
exempt from state public disclosure requirements. The Bureau of
Statistics may not reveal the names of individuals, firms, or
corporations supplying information to it.

However, agencies like the Department of Social and Health Services  and
the Department of Health have internal procedures for providing
research groups vital statistics records or other requested
information subject to internal procedures and protocols that ensure
confidentiality safeguards are followed.

Under limited circumstances, identifying information may be provided
with restrictions.

Summary of Bill: An institutional review board determines whether
vital statistic records held by state or local governments must be made
available to health research organizations in connection with a
medical or health research project.

 Vital statistic records include government records descriptive of a
 readily identifiable person including name, address, gender, voter
 registration number, birth, death, marriage, divorce, annulment and
 dates pertinent to them.

 Health research organizations are nonprofit corporations authorized
 under federal or state law to conduct health or medical research.

 Institutional review boards are any board, committee, or other group
 formally designated by an institution, or authorized under federal
 or state law, to review, approve the initiation of, or conduct
 periodic review of research programs to assure the protection of the
 rights  and welfare of human research subjects. The boards are
 provided a list of criteria for determining whether vital statistic
 records must be given to a health research organization.

      Appropriation: None.

      Fiscal Note: Requested on January 29, 1999.

      Effective Date: Ninety days after adjournment of session in
      which bill is passed.