CIS/Index
Copyright © 1999, Congressional Information
Service, Inc.
99 CIS S 4318
TITLE:
Privacy Under a Microscope: Balancing the Needs on Research and
Confidentiality
CIS-NO: 99-S431-8
SOURCE: Committee on
Health, Education, Labor, and Pensions. Senate
DOC-TYPE: Hearing Retrieve
the full text of testimony
DOC-NO: S. Hrg. 106-16
DATE: Feb. 24, 1999
LENGTH: iii+68 p.
CONG-SESS: 106-1
ITEM-NO: 1043-A; 1043-B
SUDOC: Y4.L11/4:S.HRG.106-16
MC-ENTRY-NO: 99-16571
SUMMARY:
Hearing to examine medical records confidentiality
protection issues related to the use of personally identifiable medical
information for research purposes.
Supplementary
material (p. 62-67) includes a submitted statement and correspondence.
CONTENT-NOTATION: Medical info
confidentiality protection, research issues
DESCRIPTORS:
RIGHT OF
PRIVACY; MEDICAL ETHICS; MEDICAL RESEARCH
99-S431-8 TESTIMONY NO: 1 Feb. 24, 1999 p. 6-26
WITNESSES (and witness notations):
ELLIS,
GARY B. (Dr.) (Director, Office for Protection from Research Risks, NIH)
STEINHARDT, BERNICE (Director, Health Services Quality and
Public Health Issues, Health, Education, and Human Services Division, GAO)
STATEMENTS AND DISCUSSION:
Review of
patient privacy issues related to the use of personally
identifiable medical records in research projects; explanation
of Institutional Review Board system to ensure patient confidentiality in the
event of research-related medical records transfer; strategies
to protect confidentiality of personally identifiable medical
records used for research purposes.
CONTENT NOTATION:
Medical info confidentiality protection,
research issues
TESTIMONY DESCRIPTORS:
NATIONAL INSTITUTES OF HEALTH; GENERAL ACCOUNTING OFFICE
99-S431-8 TESTIMONY NO: 2 Feb. 24,
1999 p. 26-62
WITNESSES (and witness notations):
JAMES, BRENT C. (Dr.) (Vice President,
Medical Research, Intermountain Health Care)
FELDBLUM, CHAI R. (Director, Federal Legislation Clinic,
Georgetown University Law Center; representing Consortium for Citizens with
Disabilities Privacy Working Group)
ANDREWS, ELIZABETH B. (Director, World Wide Epidemiology,
Glaxo Wellcome; representing Pharmaceutical Research and Manufacturers of
America)
STATEMENTS AND DISCUSSION:
Strategies to ensure medical record
confidentiality, with details on electronic medical information
systems; importance of medical records confidentiality to
protect privacy of research subjects; potential for
discrimination based on health conditions if medical records
confidentiality is not maintained; merits of electronic medical
records information systems.
CONTENT NOTATION:
Medical info confidentiality protection,
research issues
TESTIMONY DESCRIPTORS:
INTERMOUNTAIN HEALTH CARE; INFORMATION
SERVICES AND SYSTEMS; DISCRIMINATION AGAINST THE HANDICAPPED 
