1. HIPAA and Beyond: Privacy and Confidentiality Legislative and Ethical Issues within Health Sciences Special Collections Judith A. Wiener, MA, MLIS, Assistant Professor and Assistant Director for Special Collections and Outreach

2. The inherent nature of health sciences historical materials makes it necessary for the archivist to maintain a delicate balance between privacy and access. Introduction Credit: OSU Medical Heritage Center

3. Introduction MHC background Collection summary Access philosophies, requirements, and limitations

4. Introduction The purpose of this presentation is to briefly explore the evolution of privacy issues in medical records and to discuss its impact on both the archival profession and the historical record. This presentation is not intended as legal advice.

5. Origin of Privacy Standards Medical records always contained privacy- sensitive information. Physician's code of ethics protected these records. Development of technology and fear of technology led to the current environment.

6. The Legal Origin Privacy vs. Confidentiality 1890 and Samuel D. Warren and Louis D. Brandeis “Right to Privacy” –Concerns about photographic technology –Led to state privacy laws

7. The Legal Origin Health Insurance Portability and Accountability Act (HIPAA) –Origin –Purpose –Privacy Rule and Impact on Medical Special Collections. Credit: OSU Medical Heritage Center

8. Professional Ethical Origins Professional codes of ethics (SAA, ACA, ICA) Donor concerns Reformatting/ Digitization considerations Credit: OSU Medical Heritage Center

9. Impact and Implications Concerns for future of medical special collections Balance solutions have been reached –Privacy Boards –Policies –Redaction –Time limitations Credit: OSU Medical Heritage Center

10. Impact and Implications (MHC) Case study –Robert M. Zollinger, MD, Collection Credit: OSU Medical Heritage Center

11. Conclusion Landscape thus far –Room for study but institutions seem to be managing well. Privacy concerns and societal expectations have never been less clear-cut. Archivists at forefront of discussion through advocacy and solutions to balancing act

12. Resources and References “Code of Ethics for Archivists,” Society of American Archivists, accessed 31 July 2011, http://www.archivists.org/governance/handbook/app_ethics.asp http://www.archivists.org/governance/handbook/app_ethics.asp “Code of Ethics” Association of Canadian Archivists, accessed 27 July 2011, http://www.archivists.ca/content/code-ethics. http://www.archivists.ca/content/code-ethics “Core Value of Archivists,” Society of American Archivists, accessed on 31 July 2011, http://www2.archivists.org/statements/core-values-of-archivists. Barbara L. Craig. “Confidences in Medical and Health Care Records from an Archives Perspective,” in Privacy and Confidentiality Perspectives., eds. Behrnd-Klodt Menzi L., Wosh Peter J. (Chicago: Society of American Archivists, 2005) “Federal Register, Office of the Secretary. Modifications to the HIPAA Privacy, Security, and Enforcement Rules under the Health Information Technology for Economic and Clinical Health Act. Proposed Rules,” Department of Health and Human Services (US), accessed 31 July 2011, http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/nprmhitech.pdf.

13. Resources and References “Greek Medicine: The Hippocratic Oath,” The National Library of Medicine, accessed 31 July 2011, http://www.nlm.nih.gov/hmd/greek/greek_oath.html “HIPAA Resource Page,” Science, Technology, and Health Care Roundtable and Archivists and Librarians in the History of the Health Sciences. accessed 31 July 2011, http://www.library.vcu.edu/tml/speccoll/hipaa.html. “ICA Code of Ethics,” International Council on Archives, accessed 31 July 2011, http://www.ica.org/5555/reference-documents/ica-code-of-ethics.html Susan Lawrence S. “Access Anxiety: HIPAA and Historical Research.” Journal of the History of Medicine and Allied Sciences, 62 (2007): 426. “Securing Permission to Digitize and Display Collections Online,” Digital Library of Georgia, accessed 31 July 2011, http://dlg.galileo.usg.edu/AboutDLG/DisplayPermission.html?Welcome. Samuel D. Warren and Louis D. Brandeis, “Right to Privacy,” Harvard Law Review 4, (1890): 193-220. Judith A. Wiener and Anne T. Gilliland, “Balancing Between Two Goods Health Insurance Portability and Accountability Act and Ethical Compliancy Considerations,” Journal of the Medical Library Association, 99 (2011): 15-16.