REVIEWED BY JOSEPH D. BRONZINO, PhD
Health Care and Information Ethics: Protecting Fundamental Human Rights
Audrey R. Chapman, ed.
Sheed and Ward, Kansas City, MO
1997, 482 pp., $29.95 (paperback)
The chapters in this text address a significant problem in the application of computer technology to facilitate storage and access to patient medical records: the protection of human rights, especially the right to privacy. When these rights are abused, the entire healthcare system needs to be modified to ensure confidentiality and patients' control of information pertaining to their health status.
Editor Audrey Chapman properly frames the rationale for the material presented in each of the chapters in the "background" section. She correctly points out that "the establishment of computerized healthcare information systems has significant human rights implications" and that "protection and promotion of four fundamental human rights norms — universality, privacy, nondiscrimination and consent — will depend upon efforts to address human rights concerns in all stages of the computerization of healthcare data."
Following the two introductory chapters laying out the human rights issues, the volume has two major sections. The first addresses issues related to monitoring access to healthcare, particularly the status of underserved, vulnerable, and excluded populations. The second deals with privacy, nondiscrimination, and consent.
This material, an outgrowth of a project sponsored by the American Association for the Advancement of Science (AAAS) with support of the Robert Wood Johnson Foundation, was developed during 1994 and 1995, an extremely fluid two-year period. Major reforms to the U.S. healthcare system were under intense discussion and debate. The editor correctly points out that in August 1996, two major laws — the Health Insurance Portability and Accountability Act of 1996 (Kennedy-Kassebaum bill) and the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (welfare reform) — were passed, with significant implications for access to and use of healthcare information. This volume, therefore, is an excellent source of the modern view of the struggle between human rights and the desire to use medical technology to efficiently administer healthcare services.
The two overview chapters preceding each of the major sections, that is, Chapter 2, "Issues and Methodologies for Monitoring Universality," and Chapter 10, "Introduction and Overiew: Privacy, Nondiscrimination and Consent," are concise and well written. They convey the general issues before the American people, identify limitations in data collection, discuss data interpretation problems, and define terms and policy implications. They properly set the tone for the chapters that follow.
All chapters are generally well written and focused. Two chapters of particular note are Chapter 7, "Designing an Information System to Monitor Population Access to Care, Health and Health Care Use," and Chapter 12, "Guidelines and Mechanisms for Protecting Privacy in Medical Data Used in Research." Both are logical presentations of important aspects of human rights issues.
In general, this timely volume reflects the concerns of individuals and desires of administrators. It provides an important framework for designing and evaluating computerized efforts to develop medical database systems that adhere to human rights concerns. For the medical ethics community, it is a must read.
Joseph D. Bronzino, PhD
Vernon Roosa Professor of Applied Science
Trinity College
Hartford, CT