Ethics, Findable Patients, and Medical History

Lisa Smith's picture

Last year, my research into Sir Hans Sloane’s medical catalogues led me to the Hunterian Museum to look at the preserved babies and foetuses that were once in his collection. Although the specimens are three hundred years old and displayed online, special arrangements are required to view them in person; they are stored in areas that cannot be accessed by non-medical researchers, according to the Human Tissue Act (2004). It is not often that an eighteenth-century historian bumps up against modern ethical issues while doing research, but the emergence of several Digital Humanities projects on medical history may encourage us to think about them more.

There are now a number of database projects that make old medical records more accessible than ever before, ranging from the early modern (1500-1800) period (The Casebooks Project, The Cullen Project, and The Sloane Letters Project) to the modern (1851-1921) Historical Hospital Admissions Records Project. All are freely available online and provide rich insight into topics such as patient experience, family life, diseases, and doctor-patient relationships.

As the projects deal with the long-dead, they do not need ethics clearance, even though the records contain detailed information about names, places, diseases, and social or kinship networks. (In the case of HHARP, patient names are redacted for records post-1918.) This makes sense historically in that the experience of illness was rarely private, and our modern concept of confidentiality did not exist before the mid-nineteenth century. It was not unusual for interested family or friends to receive updates from a physician on their loved one.

But a sufferer writing a letter to a physician in the eighteenth century or visiting an astrologer in the sixteenth century could have had no concept of their consultations being made so widely available for anyone to read centuries later. At the time, though, some patients with embarrassing problems might choose to remain anonymous. In an age of linked data, moreover, it is possible to connect some of those long-dead patients with their descendants. With HHARP, the addresses and names make it possible to search across census data and Medical Officer of Health reports. Even pre-census data can present the possibility of traceable families. A descendant of two patients from Sloane’s practice (Elizabeth Newdigate and Abraham Meure) once contacted me after reading an article in which I discuss them—but Sloane’s patients are even more findable now with the database. In the Cullen Letters, a venereal disease sufferer named Alexander Macdonald of Greenock looks a likely candidate for a family tree I found on

Does this matter? In her book Family Secrets, Deborah Cohen suggests that we live in an age where historical family secrets are now primarily a way of finding closeness with our ancestors rather than providing a source of shame. Venereal disease in one’s family tree might simply make us chuckle now, but what if—in other cases—the ability to link medical data pointed to an easily-traced modern family’s darker historical secrets, such as sexual abuse?

Historians have started to take an interest in ethics. Antoon de Baets, for example, draws on human rights law to consider the rights of the living and the dead, particularly with reference to genocide history. His thoughts on disclosure might be particularly pertinent here: what is the balance between public and private interests? Will disclosure of historical facts do harm to the reputation of someone living or dead without providing sufficient public good?

DH projects in the history of medicine offer much promise, both for understanding health and illness in the past and for genealogists tracing family trees. With so much readily available and connectable data, however, historians need to take more of an interest in thinking about our underpinning ethics, even when we deal with long-dead subjects. This is not to say we should avoid telling difficult stories, rather we need to reflect more carefully on the stories we choose to tell and how we tell them.