Health Care and Information Ethics Protecting

This volume brings together experts in the fields of information ethics and health care to explore the impactions of these challenges as they impact what kind of care will be available, who will receive health care, and how the care is monitored.

Part One Background

3

(54)

Introduction Developing Health Information Systems Consistent with Human Rights Criteria

3

(28)

Audrey R. Chapman

Chapter One The Human Rights Framework

31

(26)

Audrey R. Chapman

Part Two Moving Toward Universality: Monitoring Underserved and Excluded Populations

57

(184)

Chapter Two Issues and Methodologies for Monitoring Universality

57

(9)

Doug Samuelson

Floyd J. Fowler, Jr.

Chapter Three Monitoring Welfare and Women's Health

66

(22)

Trude Bennett

Chapter Four Improving Health Data Among American Indians and Alaska Natives: An Approach from the Pacific Northwest

88

(26)

Jonathan Sugarman

Martha Holliday

Andrew Ross

Doni Wilder

Chapter Five Drawing Samples from Hidden, Underserved and Vulnerable Populations: Methods, Applications and Ethical Issues

114

(23)

James Fisher

Jichuan Wang

Joseph Wagner

Chapter Six Using State-Level Hospital Discharge Data Bases: A Source of Race/Ethnicity Data to Monitor Minority and Special Populations

137

(23)

Barbara S. Kurtzig

Chapter Seven Designing an Information System to Monitor Population Access to Care, Health, and Health Care Use

160

(31)

Noralou Roos

Charlyn Black

Norm Frohlich

Carolyn DeCoster

Marsha Cohen

Doug Tataryn

Cameron A. Mustard

Leslie L. Roos

Fred Toll

K. C. Carriere

Charles Burchill

Leonard MacWilliam

Bogdan Bogdanovic

Kathleen Decker

Chapter Eight Supporting the Delivery of Preventive Services Through Information Systems: A Manitoba Example

191

(25)

Leslie L. Roos

David S. Fedson

Janice D. Roberts

James F. Blanchard

Chapter Nine Issues Regarding Appropriate Uses of Outcomes Data in Monitoring University and Nondiscrimination in Access to Health Care

216

(25)

Doug Samuelson

R. Clifton Bailey

Part Three Privacy, Nondiscrimination and Consent

241

(226)

Chapter Ten Introduction and Overview: Privacy, Nondiscrimination and Consent

241

(11)

Paula J. Bruening

Chapter Eleven Linking Health Records: Human Rights Concerns

252

(27)

Fritz Scheuren

Chapter Twelve Guidelines and Mechanisms for Protecting Privacy in Medical Data Used for Research

279

(30)

Robert Ellis Smith

Chapter Thirteen Data for Health: Privacy and Access Standards for a Health Care Information Infrastructure

309

(42)

George T. Duncan

Chapter Fourteen Medical Data Protection and Privacy in the United States: Theory and Reality

351

(42)

Vincent M. Brannigan

Bernd Neier

Chapter Fifteen Privacy of Health Care Data: What Does the Public Know? How Much Do They Care?

393

(26)

Eleanor Singer

Robert Y. Shapiro

Lawrence R. Jacobs

Chapter Sixteen Guidelines and Mechanisms for Regulating Access to Data: Private Health Insurance Issues

419

(30)

Mary Ann Baily

Chapter Seventeen Conclusions

449

(18)

Thomas Jabine

Epilogue

467

(5)

Audrey R. Chapman

Appendices

472

(5)

Appendix One Staff and Advisory Committee of the AAAS Project on Developing a National Health Information System Consistent with Human Rights Criteria

472

(2)

Appendix Two

474

(3)

Contributing Authors

474

(3)

Index

477

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Health Care and Information Ethics Protecting Fundamental Human Rights

Summary

Table of Contents

Supplemental Materials