May 15, 1996

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