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 |
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| Authors: | Judith A Wiener Anne T Gilliland |
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| Institution: | Email: , Assistant Professor, and Assistant Director for Special Collections and Outreach;Email: Head, Copyright Management Office; Prior Health Sciences Library and Center for Knowledge Management, The Ohio State University, 376 West Tenth Avenue, Columbus, OH 43210 |
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| Abstract: | 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.Highlights- Ethical standards call upon special collections professionals to collect and provide access openly, while protecting individual privacy.
- A systematic historical investigation of legal and professional ethics literature can lead to standard best practices that address issues of privacy and access.
Implications- Special collections professionals can establish guidelines that preserve the historical record and maintain collection integrity and access, while adhering to privacy legislation and ethical concerns.
- The framework suggested here can be used to write a collection development and access policy that complies with the Health Insurance Portability and Accountability Act.
- Librarians who interact regularly with hospital administrators or researchers using patient data need to be aware of the ethical and legal issues involved in patient data retention.
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