Eileen Clark, Clarks Clerks Research Services:
We might imagine that the ethical principles governing research are universal and clearly delineated, so that an action is either right or wrong with little room for doubt. However, my recent work has shown me that different disciplines may interpret the principles of beneficence, respect for human dignity, and justice in different ways. As we move out of our disciplinary silos and away from the academy we may need to adjust our thinking about what constitutes ethical research practices. In this article, I will reflect on my experiences of publishing research from one discipline in a journal identified with another.
For much of my professional career I worked as a health sociologist and this shaped my research and publications. Recently I became interested in genealogy (family history). Until a few years ago this was considered an arcane area, with people hunched over dusty archives trying to establish whether they were related to royalty or convicts, or seeking to find out who had squandered the family fortune. The advent of information technology transformed genealogy, making it possible to store vast numbers of documents on line while powerful search engines facilitated identification of people. At first, genealogy was a hobby for me, but the more I learned about it the more I saw links between genealogy and sociology, principally in the research questions that could be asked. For example, in one project I investigated what became of women in one town who had applied through the courts for maintenance from their husbands in the early 1900s.
Professional genealogists have their own code of ethics and there are laws governing investigations in areas like adoption and inheritance, but despite some similarities there are key differences between genealogical and other research. Two of the differences are access to data and identification of participants, as I discovered when I sought to publish findings from my study of patients admitted to the Beechworth Lunatic Asylum between 1900 and 1912. My research question asked about the extent of family involvement in patients’ admission and discharge from the Asylum. There are many common beliefs around, even today, about asylums in that era. One is that fathers or husbands could get ‘troublesome women’ locked up with little difficulty, and another is that once admitted, patients were there for life. I was hoping to investigate the truth of these beliefs. I also chose the topic because of my previous research into families caring for young people with mental health issues.
Data for my study were obtained from case books that contained, often in considerable detail, the personal details, medical history, treatment and outcome for each patient. These case books are held in Melbourne by the Public Record Office of Victoria (PROV) and can be viewed there, and they have also been digitised and can be accessed on line, free of charge. Hence, the data were in the public domain, available to anyone and with no requirement to gain consent for their use or to go through any form of ethics approval. The only restriction is on publishing, in that permission is needed from PROV to publish records covered by Crown copyright. Records held by PROV and other government agencies are also covered by privacy legislation which, in general, prohibits access to records of people who may still be alive.
In many disciplines, the subjects or participants are deemed to represent a wider group of similar people and their names and identifying details are not used in publications. In contrast, genealogical research focuses on the individual or family and names are of paramount importance. Articles published in refereed and general interest genealogical journals contain information such as names, gender and date of birth for everyone mentioned, except for people who may still be alive. This presented me with an ethical dilemma when seeking to publish my study. There is still a stigma attached to mental illness today and this was much greater in the era of my study. How might descendants of my participants react to finding out that an ancestor had been in an asylum? Did I have a duty of care to them?
As my study progressed, I noticed parallels between what was happening back then and my previous work into the dilemmas faced by families today when caring for young people with mental health issues, and I decided that I wanted to publish findings in a journal with a mental health nursing focus. In response to a query, the editors replied that they would consider a historical article provided that I made explicit its relevance for current practice. Now I had to resolve the ethical dilemmas outlined above.
The journal required a statement that the research had been approved by an institutional ethics committee even though the data were in the public domain. I had done the research as part of a university course but student projects using data in the public domain were not required to undergo full ethics committee approval. To meet the journal’s requirement, I had to obtain a letter from the Department where I was enrolled, stating that the research had been approved internally and after further correspondence this was accepted by the journal. While not ignoring the need for journals to ensure that published research meets the highest ethical standards, I wonder whether editors need to consider how to respond to research based on data in the public arena? And how might independent researchers, with no institutional affiliation, obtain ethics approval?
The journal also insisted that I used pseudonyms when referring to specific patients. I had expected this given the context in which I was writing and it did not detract from the integrity of the findings. It was, however, surprisingly hard to do. I had worked on this project for about 15 months and ‘knew’ some of the patients by name, and finding suitable pseudonyms was challenging. I believed that the names had to be correct for the chronological context (no Kylies or Jasons in that era) and I had to make sure I did not use the name of a real person inadvertently.
I was able to respond to these ethical challenges and the article was published. I think that my journey through the publication process was helped by my experience of having several previous publications and knowing that most problems can be overcome. It did make me realise, however, that when we step outside of accepted disciplinary boundaries we may face a whole new set of ethical issues.