Susan C. Lawrence. Privacy and the Past: Research, Law, Archives, Ethics. Critical Issues in Health and Medicine. New Brunswick: Rutgers University Press, 2016. 188 pp. $49.95 (cloth), ISBN 978-0-8135-7436-3.
Reviewed by Pat Reynolds (independent scholar)
Published on H-Disability (September, 2018)
Commissioned by Iain C. Hutchison (University of Glasgow)
Although this book was published in 2016, it feels older, partly because research for it began in the previous decade. The introduction is an account of a particular experience of supervising a historian who had difficulty accessing records: “From talking with historians, archivists, graduate students, and others in the years since … it became very clear to me that conditional access to archival materials, confusion about privacy claims for the dead, and the creeping influence of the language of research ethics are all affecting those who work on the history of the last 200 years” (p. 16). The book explores what it means to be sensitive about privacy for the dead. It is an attempt to understand the “power [of privacy laws] and the role that historians have in negotiating the boundaries between individual privacy and historical accuracy” (p. 1). One chapter is devoted to research ethics and federal laws, one to the legal context for the practice of history, a third to the practices of archivists that result, or do not result, in a record being open to a few or to all, and a fourth to the work of historians. The book focuses on the United States. This is understandable, given the complexities of law, archival practice, historical research ethics, and other areas covered within a single country of multiple jurisdictions. As a European non-lawyer, who has not worked in an archive in the United States, and whose research there has largely been with archaeological finds and sites and published documents, I am grateful for the clarity with which the author lays out the situation in these areas. Occasionally, I felt that a slightly wider view would have been helpful. For example, coverage of the General Data Protection Regulation (GDPR), which came into force in many European countries in May 2018, and the “Right to be Forgotten” in its predecessor, the European Data Protection Directive, would have been useful since the legislation is centered on the citizenship of the individual, not their physical locality. The chapter on research and ethics includes a very helpful table of the applicable federal laws (to 2013). It covers in some detail the case of the Adams County Historical Society, who wished to make burial records from the Hastings Regional Center (formerly the Hospital for the Incurably Insane, etc.) available, as the graves were only marked with numbers. In this chapter, Lawrence argues that the term “research” in the influential Belmont Report has been inappropriately used to cover historical research, rather than being appropriately restricted in all instances where it is mentioned to biomedical and behavioral research. Thus, it says it covers any investigation which “obtains (1) data through intervention or interaction with the individual [e.g., talking], or (2) identifiable private information.” However, the element in brackets is not in the original. The report gives the examples of venipuncture and manipulation of the subject’s environment to clarify this definition. However, the author wishes to indicate that the definition could apply to talking and thus includes oral history. My own background is in archaeology, which in the United Kingdom is seen as a specialism of history (rather than of anthropology, as in the United States), and thus I would challenge the assertion that historians do not usually test hypotheses or follow formal procedures. The first time the author encountered the law, it was in the form of the Health Insurance Portability and Accountability Act (HIPPA), which covers the use of individual’s health information, whether that individual is living or dead, if the information is housed in a building that has the health information of living people. Lawrence notes that this act is grounded in the belief that medical information exchanged between a patient and their medical practitioner is to be kept confidential between the two, and not be more widely shared, even after death. However, HIPPA is used to protect information that is not confidential, but visible to everyone. She also notes the argument that revealing hereditary medical conditions of the dead can have an impact on insurance costs and coverage restrictions—or even access to insurance for living family members. A wider range of not necessarily medical conditions, including abuse, abortion, adoption, ethnicity, sexuality, and poverty, are assumed to have a familial component, and public knowledge of such conditions can thus harm the living. However, the author has found no documented case of this, yet the fear of harmful gossip is real in tight-knit communities, and she notes that to protect this data, rather than opening it, removes the experiences of these people from history. The fear of harm (and lack of knowledge of benefits) is apparent as the driver for privacy throughout the book, but there is remarkably little research or case law presented here. Examples of benefit, in particular, need to be shared. It seems strange that legal aspects of oral history are included, as they stretch the coverage from the dead to the living, but other methodologies of recent history, such as participatory research and big data, are not. The living do need to be included in this work, as the author argues that, if the records of the living are not collected or created, they will not exist for future historians, they might be included only incidentally, and the rights of the living will increasingly be extended to the dead, in perpetuity. And those rights, or more particularly, the penalties for breaching them, firmly encourage caution by those who have the power to grant access or cause what could be viewed as a data breach. In considering the role of the oral historian, I found it odd that giving the subject the power to edit and redact was not included, although the power to censor is mentioned later in a case study of textual history. In the chapter on the legal context for historians, Lawrence helpfully compares the relationship of journalists and historians to the First Amendment. Again, the power to decide the potential of harm is important. For journalists, case law does exist for material harm, but rarely has it involved the privacy of the dead—the exception being images of recently, and horrifically, murdered people. Lawrence notes that vilification of the dead is a crime in some states, but monetary damages have not been awarded. The crime is that of incitement—the information would lead or has led to a breach of the peace by others. In the chapter on archivists and allied professions, Lawrence argues that ethical codes are “useful aspirational documents” that are an aid to decision-making, but not particularly helpful in specific circumstances (p. 70). This is not the case in the United Kingdom, where the “individual members [of the Archives and Records Association] have a duty to obtain a ruling, through the Honorary Secretary of the Association, on all occasions when they are in doubt as to the proper standards of professional behaviour.” While the author struggles to identify instances when archivists proactively used the materials in their care “as agents of resistance and exposers of crime,” it is clear that all archivists see their role as crime prevention agents, primarily through the maintaining, unalterable without that alteration being evident, records that support “legal, fiscal, political and social accountability” (p. 73). Given that many archivists take a passive role in social activism and crime detection, but enabling others to hold wrong-doers accountable is a prime role, the right of access to materials is a vitally important topic, which is explored in detail. Lawrence covers the practices of selection and disposal, closure and redaction, and user management. On this last topic, she argues convincingly that denying access to researchers who do not have the right background (academic or social), in part through ensuring that useful information does not appear in finding aids, and in part through obscure formal application processes, is not granting privacy to the dead. Lawrence hints, but does not make explicit, that these practices are discriminatory against persons with disabilities, who are less likely to have “the right background,” less likely to be able to travel to the archive, and less likely to be able to afford pay-to-view data. Thus those with the most to gain from open access to health and disability records are more likely to be kept from the knowledge that they exist, or of what they contain. The author goes on to explore in detail the processes and practices that may be involved in the transfer of records from individual ownership to an archive, and discusses attitudes to the intentions of the dead, as expressed in their lifetime, from the viewpoint of both archivist and historian.
The sixth chapter returns to the work of historians. It is clear that by “historian” the author means someone working within an academic setting or as an independent scholar, but not someone researching in a commercial, personal, or community setting, such as an antique dealer researching provenance, a family historian, or a member of a local historical society working on a walking guide to historic buildings. Three aspects of consideration of privacy are noted: in passing on research, in finding sensitive information, and in what they publish. Historians of all these kinds amass data, sometimes donate it to an institution (such as an archive, a genealogical entity, or local amenity group), or sell it (as is the case with a family tree or a provenance). They almost all use a mixture of public and more closed sources. They almost all publish in some form—be that an auction catalogue, an online family tree, or a downloadable pdf on a parish website. Lawrence acknowledges that there is a “wider world of scholarly and academic publishing” and attempts to distinguish the biography and exposé from history, although she recognizes that some historians do focus on individuals, or write with a social justice agenda (p. 91). I remain unconvinced that they are divisible in the way that (say) history and botany are. The exposé, by its nature, always puts the interests of the many above those of descendants and wrong-doers (or asserts that it does), whereas history may, or may not. Lawrence distinguishes history from memory and argues that they have distinct moral stances. History, as a discipline (and the examples of nonacademic historians I gave fit this definition), has standards for rigorousness of research, and counterarguments are expected. Enshrined memory, on the other hand, is based on a collective belief that some things should not be forgotten, and is used for building and sustaining identity. As such, the dead continue to have a “symbolic existence” (pp. 110-11, quoting Daniel Sperling). Lawrence concludes that historians have to take a critical view of their intuitions about harm, and thoughts about respecting that symbolic existence, and this makes “overgeneralised ethical positions and inadvertently restrictive regularity language” inappropriate (p. 113). She therefore calls for a 115-year closure period for “only the most extremely sensitive of records” (p. 120). Throughout, the key issue behind legal and ethical frameworks protecting the dead is revealed as stigma. Do we (archivists and researchers) act in ways that challenge stigma, or do we perpetuate stigma by acknowledging that it exists and protecting the living individual or symbolically existing dead from affiliation with a vilified group or behavior by reason of descent, hero worship, or some other association? The potential for the revelation of a stigmatizing attribute of a dead person to lead to civil unrest mentioned before says much about how a section of society views that attribute. The focus of this book is largely on how we (as a society, its components and individuals) can best prevent unnecessary and damaging restrictions to access. It would be excellent to see companion volumes addressing these issues in different legislatures and cultures.
. Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation).
. Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data.
. The reference to section 46.102(f) of the Belmont Report (https://www.hhs.gov/ohrp/ regulations-and-policy/regulations/45-cfr46/index.html#) is incorrectly cited by the author as 45 CFR 46.02(f). See https://www.hhs.gov/ ohrp/regulations-and-policy/belmont-report/ index.html.
. In an alternative, positive, view of gossip, Melanie Tebbut notes how women use gossip to provide support and protection rather than simply to degrade and harm. Women’s Talk?: A Social History of “Gossip” in Working-Class Neighbourhoods, 1880-1960 (Aldershot, England: Scolar Press, 1995).
. “ARA Code of Ethics,” adopted May 9, 2018, Archives and Records Association UK and Ireland website, accessed August 5, 2018, http://www.archives. org.uk/about/ethics.html.
. Elizabeth C. Macknight, “Archives, Heritage, and Communities,” Historical Reflections/Réflexions Historiques 37, no. 2 (2011): 105-22.
. Daniel Sperling, Posthumous Interests: Legal and Ethical Perspectives (Cambridge: Cambridge University Press, 2008), 239.