Balancing between Two Goods: Health Insurance Portability and Accountability Act and Ethical Compliancy Considerations for Privacy-Sensitive Materials in Health Sciences Archival and Historical Special Collections
Wiener, Judith A., Gilliland, Anne T., Journal of the Medical Library Association
Objective: The investigation provides recommendations for establishing institutional collection guidelines and policies that protect the integrity of the historical record, while upholding the privacy and confidentiality of those who are protected by Health Insurance Portability and Accountability Act (HIPAA) or professional ethical standards.
Methods: The authors completed a systematic historical investigation of the concepts of collection integrity, privacy, and confidentiality in the formal and informal legal and professional ethics literature and applied these standards to create best practices for institutional policies in these areas.
Results: Through an in-depth examination of the historical concepts of privacy and confidentiality in the legal and professional ethics literature, the authors were able to create recommendations that would allow institutions to provide access to important, yet sensitive, materials, while complying with the standards set by HIPAA regulations and professional ethical expectations.
Conclusion: With thoughtful planning, it is possible to balance the integrity of and access to the historical record of sensitive documents, while supporting the privacy protections of HIPAA and professional ethical standards. Although it is theorized that collection development polices of institutions have changed due to HIPAA legislation, additional research is suggested to see how various legal interpretations have affected the integrity of the historical record in actuality.
Special collections professionals in institutions with health sciences history collections balance on a legal and ethical tightrope of preserving and providing access to the historical record, while at the same time respecting the confidences of those whose lives are reflected in the records. Although a great deal of information is available on the topics of privacy and the ethical responsibility of the archivist to the historical record, there is little formal information on how to reconcile these two distinct professional responsibilities when providing access to collections. These issues and responsibilities can come up for any librarian in a health sciences setting, such as a hospital librarian who is given or acquires old medical records. This article is a synthesis of the information available on these two subjects with the goal of making recommendations that balance protecting the future historical record and collection integrity with guarding the privacy of those who are protected by the Health Information Portability and Accountability Act (HIPAA).
The analysis and recommendations presented here are based on a review of the ethical, legal, and professional literature as well as the experience of the authors. The formal historical, legal, ethical, and archival literature on the requirements of HIPAA, related privacy and confidentiality laws, and privacy norms of professional ethical codes were surveyed. Many of these sources are listed in the Science, Technology, and Healthcare Roundtable of the Society of American Archivists and the Archivists and Librarians in the History of the Health Sciences online resource guide [I]. A number of institutions have placed their HIPAA-related policies online, and these were consulted as well. The authors also found the policies of the Alan Mason Chesney Medical Archives of the Johns Hopkins Medical Institutions  and of the Augustus C. Long Health Sciences Library Archives and Special Collections of Columbia University helpful . From this survey, it became apparent that there are both legal and ethical issues that must be considered in developing collection policies in this arena.
The evolution of the law of confidentiality and privacy mirrors the changes in the way society has come to think about these issues over time. Technological innovations have provided the impetus for many of these changes in thinking. …