Privacy and the Past: Research, Law, Archives, Ethics (Critical Issues in Health and Medicine)

When the new HIPAA privacy rules regarding the release of health information took effect, medical historians suddenly faced a raft of new ethical and legal challenges—even in cases where their subjects had died years, or even a century, earlier. In Privacy and the Past, medical historian Susan C. Lawrence explores the impact of these new privacy rules, offering insight into what historians should do when they research, write about, and name real people in their work. Lawrence offers a wide-ranging and informative discussion of the many issues involved. She highlights the key points in research ethics that can affect historians, including their ethical obligations to their research subjects, both living and dead, and she reviews the range of federal laws that protect various kinds of information. The book discusses how the courts have dealt with privacy in contexts relevant to historians, including a case in which a historian was actually sued for a privacy violation. Lawrence also questions who gets to decide what is revealed and what is kept hidden in decades-old records, and she examines the privacy issues that archivists consider when acquiring records and allowing researchers to use them. She looks at how demands to maintain individual privacy both protect and erase the identities of people whose stories make up the historical record, discussing decisions that historians have made to conceal identities that they believed needed to be protected. Finally, she encourages historians to vigorously resist any expansion of regulatory language that extends privacy protections to the dead. Engagingly written and powerfully argued, Privacy and the Past is an important first step in preventing privacy regulations from affecting the historical record and the ways that historians write history. In 2006, A Hipaa Compliance Officer In A Rural Iowa County Wanted To Shut Down A Graduate Student's Research On A Manuscript Register Of Those Admitted To A Poor Farm In The Nineteenth Century. The Reason? It Contained Sensitive Health Information That Could Affect The Well-being Of Living County Residents. The 2003 Hipaa Privacy Rule Did, In Fact, Protect This Document From Historians' Prying Eyes. In Privacy And The Past, Susan C. Lawrence Explores Why She Found This Experience So Troubling. In The Process, She Explores Historians' Ethical Obligations To Their Research Subjects, Both The Living And The Dead. She Queries The Extent To Which We Do And Should Control Access To Information About People As Historical Actors And As Unwitting Participants In Past Events. She Questions Who Gets To Decide What Is Revealed And What Is Kept Hidden In Decades-old Records. She Examines Laws And Court Cases, And Tackles Archives And Archivists. She Looks At How Demands To Maintain Individual Privacy Both Protect And Erase The Identities Of People Whose Stories Make Up The Historical Record. She Encourages Historians To Vigorously Resist Any Expansion Of Regulatory Language That Extends Privacy Protections To The Dead. This Book Offers A Critical Analysis Of The Ways That Broad Privacy Concerns Shape How And When Historians Can Understand Individuals' Lives As They Created Our Collective American Past. -- Introduction : The Historians, The County, And The Dead -- Research, Privacy, And Federal Regulations -- Historians, The First Amendment, And Invasion Of Privacy -- Archivists At The Gates -- Managing Privacy : Historians At Work -- Conclusion : Resistance. Susan C. Lawrence. Includes Bibliographical References And Index. "In 2006, a HIPAA Compliance Officer in a rural Iowa county wanted to shut down a graduate student's research on a manuscript register of those admitted to a poor farm in the nineteenth century. The reason? It contained sensitive health information that could affect the well-being of living county residents. The 2003 HIPAA Privacy Rule did, in fact, protect this document from historians' prying eyes. In Privacy and the Past, Susan C. Lawrence explores why she found this experience so troubling. In the process, she explores historians' ethical obligations to their research subjects, both the living and the dead. She queries the extent to which we do and should control access to information about people as historical actors and as unwitting participants in past events. She questions who gets to decide what is revealed and what is kept hidden in decades-old records. She examines laws and court cases, and tackles archives and archivists. She looks at how demands to maintain individual privacy both protect and erase the identities of people whose stories make up the historical record. She encourages historians to vigorously resist any expansion of regulatory language that extends privacy protections to the dead. This book offers a critical analysis of the ways that broad privacy concerns shape how and when historians can understand individuals' lives as they created our collective American past."-- Provided by publisher Cover Series Title Copyright Dedication Contents Acknowledgments Chapter 1 | Introduction. The Historians, the County, and the Dead Chapter 2 | Research, Privacy, and Federal Regulations Chapter 3 | Historians, the First Amendment, and Invasion of Privacy Chapter 4 | Archivists at the Gates Chapter 5 | Managing Privacy. Historians at Work Chapter 6 | Conclusion. Resistance Notes Bibliography Index About the Author