Senator Nancy Kassebaum, Chair
Committee on Labor and Human Resources
428 Dirksen Senate Office Bldg.
Washington, DC 20510-6300
Senator John Warner, Chair
Committee on Rules and Administration
305 Russell Senate Office Bldg.
Washington, DC 20510-6325
Dear Senators Kassebaum and Warner:
We are writing to express the frustrations of many American citizens who cannot effectively monitor the actions of the U.S. Congress, because the Senate does not give ordinary citizens the same access to key legislative documents that it gives to interest groups that can afford full-time lobbyists. Our immediate concern is the refusal of the Senate Labor Committee to provide online access to a series of discussion drafts of S. 1360, the Medical Records Confidentiality Act. This controversial legislation seeks to pre-empt state laws in favor of a federal system regulating access to personal medical records. The legislation is controversial and complex and the stake holders are many. Privacy and consumer groups say the legislation provides too much access and too little privacy, while industry groups are pressing for even easier access to identified medical records.
The legislation was introduced last October. Beginning in April, the Committee on Labor and Human Resources has prepared several "discussion drafts" for a new chairman's mark. These drafts have been given to lobbyists, but the Committee staff has refused to make the text of the drafts available on the Internet where they would be readily available to the general public. As a consequence, as Equifax, IBM, Dun & Bradstreet, TRW, Blue Cross, Aetna, and other groups with full-time lobbyists read each and every new discussion draft, the general public mistakenly believes the October 24, 1995 version of the bill represents the relevant text of the legislation.
Why keep the discussion drafts from the general public? The bill is very long, and it is costly and difficult to distribute the bill in the paper formats. Most citizens don't have any way of even knowing that the various discussion drafts even exist.
With efforts to push for a rapid mark-up on S. 1360 it seems urgent to resolve this issue soon. More generally, however, the Senate should adopt new rules about access to the various types of "unofficial" drafts of bills, including committee prints, manager's amendments, chairman's marks, and widely disseminated discussion drafts, which are the real stuff of the legislative process. The text of these important documents should be placed on the Internet for the benefit of the general public, as soon as they are made available to Washington lobbyists.
Sincerely,
Gary Ruskin, Director
Congressional Accountability Project
Member, Advisory Committee, Congressional Internet Caucus
gary@essential.org
Lori Fena, Director
Electronic Frontier Foundation
lori@eff.org
James Love, Director
Consumer Project on Technology
love@tap.org
Jim Warren, tech-policy columnist and open-government advocate
Government Technology Magazine, MicroTimes Magazine, etc.
345 Swett Rd., Woodside CA 94062; voice/415-851-7075
jwarren@well.com
Daniel Downey, MD
Member, Medical Record Confidentiality Committee
Virginia Mason Medical Center
ddowney@u.washington.edu
Elaine Hopkins
Peoria Journal-Star
ehopkins@heartland.bradley.edu
Sarah Thompson, MD
molly@aros.net
Evan P. Provisor, MD MS FACS
evan@li.com
Beverly Woodward
Research Associate in Philosophy and Sociology
Brandeis University
WOODWARD@BINAH.CC.BRANDEIS.EDU
Lauren Dame, Staff Attorney
Public Citizen's Health Research Group
LDAME@citizen.org
Edmund Mierzwinski
Consumer Program Director
U.S. Public Interest Research Group (U.S. PIRG)
ed@pirg.org
Dick Mills
rj.mills@pti-us.com
Connie K. Page
PCK11399@centum.utulsa.edu
James D. Brady
jbrady@freenet.columbus.oh.us
Daniel J. O'Shea
Faculty Member
Hillsborough Community College
Tampa, Florida
doshea@ansremote.com
David Mull
dmull@usit.net
Margaret Tarbet
tarbet@swaa.com
Barry Gold
3965 Alla Rd.
Los Angeles, CA 90066
barry@janus.la.platsol.com
Gil Gilmore
3 Oriole Dr
Norwalk, CT 06851-5608
wgilmore@concentric.net
Henry N. Camp
President
Medical Systems Development Corporation
henry@msdc.com
Edward J. Farrell
Westland, MI
efarrell@POPD.netcruiser
Cameron L. Spitzer
1141 Jonesport CT
San Jose CA 95131-2831
cls@truffula.sj.ca.us
Richard S. Russell
RSRMadison@aol.com
Samuel Mikes
smikes@osiris.ac.hmc.edu
Leo C. Thompson, Th.M.
Licensed Marital & Family Therapist
3717 National Drive, Suite 202
Raleigh NC 27612-4877
leo@intercenter.net
Paula Britson
Mayo Foundation (employer information for identification purposes only)
Rochester, MN 55905
britson@mayo.edu
"Phillip C. Reed"
reedpc@libbey.com
Robert N. Sidebotham
1028 LaClair Ave.
Pittsburgh, PA 15218
rns@fore.com
Richard Mack
Principle Software Engineer
6341 Asbury Lane
Troutville VA 24175
mack@fibercom.com
Alex Y. Kwok
AKwok@seic.com
Jenise M. Sidebotham
1028 LaClair St.
Pittsburgh, PA 15218
jms@city-net.com
Michael Hirsch
Assistant Professor
Emory University, Atlanta, GA 30322
hirsch@mathcs.emory.edu
Jim Wright
Keck Center for Integrative Neuroscience
513 Parnassus Ave, Room HSE-802, Box 0444
UCSF, San Francisco, CA 94143-0444
jwright@phy.ucsf.edu
Davidx Posey
Davidx_Posey@ccm.sc.intel.com
Everett G. Hughes
eghughes@midwest.net
Scott Lucero
Alexandria, VA
lucero@optec.army.mil
Arve Kjoelen
Systems Administrator,
EE Dept., Southern IL. U. - Edwardsville
akjoele@ee.siue.edu
Charles E. Christian, Jr.
c_christian@msn.com
Dave Broske
dbroske@carleton.edu
Karen Lawrence
Asst. Vice Provost, University of Pennsylvania
210 College Hall, 36th and Spruce Street, Phila., PA 19104-6381
lawrence@pobox.upenn.edu
Dr. Daniel Lieuwen
New Providence, NJ
lieuwen@allegra.att.com
Rose Clam
Library Technical Assistant III
Mail Code 6632
Morris Library - Cataloging & Order Department
Southern Illinois University at Carbondale
Carbondale, IL 62901
rclam@lib.siu.edu
Sean R. Kirkpatrick
beanie@wco.com, seank@floyd.santarosa.edu
Ellen L. Hahne, Ph.D.
hahne@bell-labs.com
Rebecca A. Spainhower
Student, Northeastern University, Boston, Massachusetts
Technical Writer
rs@world.std.com
Dr. James A. Murray
0357 U.C., San Diego
La Jolla, CA 92093-0357
jamurray@ucsd.edu
Neil Drake
Midland, MIchigan
nDrake@dow.com
Phillip E. Parker
Math. Dept.
Wichita St. Univ.
Wichita KS 67260-0033
pparker@twsuvm.uc.twsu.edu
Mike Coleman
6010 N Flora
Gladstone, MO 64118
coleman@cstp.umkc.edu
Shabtai Klein
shabtai@aol.com
David M. Archer
dmarcher@io.com
Steve Goldhaber
goldy@compatible.com
Cheryl L. Berthelsen, PhD, RRA
Associate Professor, Health Information Management
cherylb@fiona.umsmed.edu
Richard Stein
620 Park View Drive #104
Santa Clara, CA 95054
rstein@xsvr1.cup.hp.com
Arlene Lea@aol.com
Law Office of Arlene Lea
11338 Kenyon Way, Suite B-300
Alta Loma, CA 91701-9236
Kathleen H. Feher MA, RRA
Director, Health Information Services
Belleville, IL
KATHF@apci.net
Ellen Keyne Seebacher
elle@midway.uchicago.edu
Esther Lumsdon, Cary, NC
esther.lumsdon@imonics.com
Marjorie Mullen
Morgana49@aol.com
Michael R. McNeill RN
Associate Government Program Analyst/ Health Facility Evaluator Nurse
HW1.MMCNEILL@HW1.CAHWNET.GOV
Anthony Ambuehl
Student, Georiga Institute of Technology
gt4937c@prism.gatech.edu
Linda Golabiewski, RRA
Data Manager
Maricopa Health System
Phoenix, AZ
lgolabie@mmcaamss.maricopa.gov
Paul Adams
GrammaTech, Inc.
adams@grammatech.com
Charlie Reading
C.READING@CSI.compuserve.com
Dr. Jonathan Foote
Department of Engineering
Cambridge University
Trumpington Street
Cambridge CB2 1PZ
ENGLAND
jtf@eng.cam.ac.uk
Robert Bulmash
President & Founder
Private Citizen, Inc.
prvtctzn@aol.com
STEPHEN M. HAYES
Business Service Librarian
313 COLL. OF BUSN. ADMIN. BLDG.
UNIVERSITY OF NOTRE DAME
NOTRE DAME IN 46556-0399
HAYES.2@ND.EDU
Steve Hollingsworth
Vice President/Sr Systems Applications Manager
First Chicago NDB Corporation
Steve_Hollingsworth@em.fcnbd.com
Marv watkins
marvw@cup.hp.com
Susan Parker, RRA
President, North Carolina
Health Information Management Association.
bbrown@CASWELL.DHR.STATE.NC.US