Privacy and Health Research

A Report to the U.S. Secretary of Health and Human Services

May 1997

OFFICE OF THE ASSISTANT SECRETARY
FOR PLANNING AND EVALUATION

From:
William W. Lowrance, Ph.D.
Consultant in Health Policy
18A, Quai du Seujet
CH-1201 Geneva
Switzerland
+41 22 738-4243 telephone
+41 22 738-4288 telefax
lowrance@iprolink.ch
Division of Data Policy
Office of Program Systems
Office of the Assistant Secretary for Planning and Evaluation
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201

Contents

Preface

Executive Summary

1. Coupled Societal Goods: Privacy and Research

2. Health Data and Data Holders

3. Data from Research, Research on Data

4. Identifiability, Consent, and Protections

5. New Laws in Europe

6. The U.S. Legal Context

7. Major Current Issue Clusters

8. Principles

Appendix: The Author, and ASPE

Endnotes


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Last updated 7/23/97.