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May 10 Workshop / Medical Privacy - Revised Program
this is the most recent program for the May 10, 1996 Workshop on Medical
Records Privacy. jamie
Workshop on Medical Records Privacy
(revised program)
CO-SPONSORED BY:
American Civil Liberties Union
Consumer Project on Technology
Computer Professionals for Social Responsibility
Coalition for Patient Rights
Electronic Privacy Information Center (EPIC)
JRI Health Law Center
Friday, May 10, 9 a.m. to 4 p.m.
The Carnegie Institution
1530 P Street, NW, Washington, DC
The U.S. Senate is considering legislation that would pre-empt
most state laws on health care privacy, and create a new federal
system regulating access to medical records. The proposed
legislation, S. 1360 is controversial.
Many privacy groups say that S. 1360 provides far too much access
to personally identified medical records by insurance companies,
employers, schools, medical researchers, public health and law
enforcement officials. These groups say that technology has
outpaced policy, that the legislation fails to address the
radical changes in the way records are stored and disseminated,
and that the proposed legislation does more to promote access to
records than to assure patients that their medical records will
be private.
Supporters of S. 1360 claim that the legislation strikes a
balance between the needs of industry and government and the
patient's rights to privacy, and that extensive third party
access to personal medical records is both inevitable and
socially desirable.
The May 10 workshop features experts from a number of fields, and
tackles some of the most thorny controversies.
9:00 am Who really controls access to medical records? What is
coercive consent? What proposals would enhance patient
control over access to records?
Moderator, John Roberts, MD. North American Editor, British
Medical Journal.
Lawrence Gostin, Professor of Law at Georgetown University Law
Center and Professor of Public Health at Johns Hopkins
University School of Hygiene and Public Health. Editor of
JAMA's section on Health Law and Ethics, and former Chair of
President Clinton's Health Care Task Force group on Privacy
and the Health Care Infrastructure.
Mark Rothstein, Hugh Roy and Lille Cranz Cullen Distinguished
Professor of Law and Director of the Health Law and Policy
Institute at the University of Houston. Author of The
Genome and the Future of Health Care, and consultant to
several federal agencies.
Respondent, Denise Nagel, MD. Psychiatrist in private practice,
President of the Coalition for Patient Rights of New
England, Chair of Medical Privacy Confidentially Project,
Coalition for Patient Rights, Chair of the Medical Privacy
Coalition.
10:30 am Non-consensual Access to Medical Records by Civil
Litigants, Law Enforcement and Other Government
Oversight Officials
Moderator, David Banisar. Policy Analyst, Electronic Privacy
Information Center (EPIC), Deputy Director of Privacy
International, and a member of Computer Professionals for
Social Responsibility (CPSR).
Don Haines, Attorney, American Civil Liberties Union.
Andrew Grosso, formerly the head of the first joint federal and
state health care fraud task force. Vice Chair of the ABA
Criminal Justice Section's Committee on Science and
Technology, member of Association for Computing's Committee
on U.S. Pubic Policy (USACM).
A.G. Breitensten, Director of the JRI Health Law Institute (HLI)
in Massachusetts. HLI represents over 20 AIDS Organizations
in the Boston area who are suing the Inspector General of
Health and Human Services regarding the Inspector General's
claimed right to access and disclose the identities of
people receiving AIDS services from federally funded
organizations.
Noon to 2 p.m. Lunch.
Lunch will feature discussions of current policy initiatives.
Representative Jim McDermott (invited). Representative Jim
McDermott (D-WA), who is trained as a psychiatrist, is an
important Congressional supporter of efforts to enhance
privacy of medical records and to protect the public from
discrimination based upon genetic information. He will be
joined by Martha Soto from Representative McDermott's
office.
Wendy McGoodwin, Executive Director, Council for Responsible
Genetics, will discuss efforts in Congress to address
problems of genetic discrimination.
Anthony Kraus and Mimi Azrael will discuss the current
controversies over the Maryland Medical Claims Data Base,
considered to be the first and most comprehensive
centralized, encounter-level database of its kind in the
U.S. Mr. Kraus is a principal with the firm of Miles &
Stockbridge, a litigator of invasion of privacy suits, and
is active in efforts to preserve medical privacy. Mimi
Azrael is an attorney with the firm Azrael, Gann and Franz,
and a specialist in civil rights and consumer protection.
2 p.m. - 4 p.m. Management of Medical Records. What types of
security are desirable and feasible in
computerized health care information systems?
Moderator, James Love. Director of the Center for Study of
Responsive Law's Consumer Project on Technology.
Professor Ross Anderson. Faculty member at Cambridge University
Computer Laboratory and Security Adviser to the British
Medical Association. Professor Anderson is a well known
specialist in cryptography and computer security who has
developed a security policy model for medical records.
Professor James Fackler. Professor of Anesthesia and Pediatrics
at Harvard Medical School, Associate Director of Children's
Hospital Informatics Program. Professor Fackler's research
includes explorations of the use of the world-wide-web
technologies for medical record integration, and systems and
policies for protecting patient privacy.
Respondent. Kristin Welsh (invited). Ms. Welsh is a staff
person for the Committee on Labor and Human Resources, who
is on Medical Records Privacy.
Version 2.0
REGISTRATION
Registration isn't required, but it is appreciated (it helps us
plan). To register, please send a note to:
Manon Anne Ress
Consumer Project on Technology
P.O. Box 19367, Washington, DC 20036
Voice: 202/387-8030; Fax 202/234-5176
Internet: mress@essential.org
Name:
Organization:
Telephone:
Fax:
Internet:
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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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