The things we do not talk about

Things have been a bit quiet on the blogging front for the past couple of months. This has been for a few reasons.

a) I have been preparing for the end of my current project (which officially finished last week) by doing rather a lot of other writing – conference papers for the imminent summer conference season, a book proposal, detailed chapter outlines, even some things that some day may actually start to look like chapters of the book I want to complete this summer.
b) I have been preparing for the beginning of the next project, which should start in September, by finalising a number of administrative details including, most time-consumingly it turns out, organising an ethical review of the project and responding to several ethical queries raised by the body funding the work. Because the basis of the project involves documentation relating to the medical histories of ex-servicemen from the First World War, this has turned out to be more complicated than anticipated, as I will come back to in a minute.
c) Three members of my close family are suffering from illnesses which have involved a significant commitment of temporal and emotional resources from me, including multiple trips to the US. The severity of these conditions ranges from the life-threatening to the debilitating but all have been life-altering, both for the sufferers and for those of in their immediate family who, along with a variety of medical professionals, are seeking to care for them.

Now, you may have noticed that I am being rather vague about the specific details of the illnesses that have become such a central part of my life recently. This is deliberate. I have spoken in more detail about what is happening with various friends and colleagues who may be able to identify some or all of the family members I am referring to. Even then, outside my family and one or two very close friends whose support in maintaining my own equilibrium has been invaluable to me, I have not confided the precise details of diagnosis, treatment or prognosis.

This is for two reasons. Firstly, these medical details are not mine to share. They are, by all accepted ethical standards, the information of the patients. They have chosen to share this information with me (thankfully, as this has allowed me to offer what support I can to people I love very much and who are important to me), but have not necessarily chosen to share it more widely. It is not my right to share it in ways that they might not wish me to, however much the information shapes my own life. Indeed, on at least one occasion I have been asked specifically not to discuss the situation in detail with people outside the immediate family.

But, even if I had the explicit permission of the primary individual to share this information, there are other important considerations I need to take into account before discussing these illnesses. Because the sufferer and I are not the only ones involved. Coping with these conditions has, in all three cases, involved important interconnected networks which include, from my perspective, my husband, my parents, my siblings, my dad’s wife and her daughters, my children and my in-laws. All of us within these networks have our own emotional relationship with the illnesses and those suffering from them (as well as a variety of other additional stresses in our live – new jobs, house moves, professional concerns, etc.) Not all of us might be comfortable with a public discussion of the details of the medical matters that are shaping all our lives so profoundly.

Which brings me back to those ethical questions that I have been attempting to answer over the past six weeks. I was asked, among other things, to confirm that the information I will be collecting and analysing for the project is in the public domain and does not contravene any data protection laws. As it happens, the information is all publicly available and, because the subjects whose data is being scrutinized are dead, data protection laws do not apply. However, I was also asked to consider whether I was likely to reveal information (specifically medical details) that might be considered sensitive to those who are living. And here the issue of confidentiality arises. Because while the data involved may not be that relating to any living person, there is the possibility that the stories the data has to tell – about medical conditions and the care provided and received for these conditions – might be considered sensitive by surviving family members. Information about the nature of a wound or illness might be exposed which challenges the family stories told about a relative. Details of care might reflect new light on the behaviour of surviving family members. Embarrassing details about the effects of wartime injuries might emerge. As I haven’t yet done the research, I don’t know if such information will emerge; even if it does, I cannot predict whether any individual family or family member might be negatively affected by the information if they ever become aware of my research. Ethically I cannot ignore the possibility and must consider what contingencies I must put in place to ideally prevent and, in the worst case, remedy, any such effect.

The result has been a number of long and very fruitful conversations, in person, on the phone and via email, with a variety of archivists, data protection officers and researchers working in related ethical fields. The ultimate conclusion is that I will keep the sensitivity of the information I am dealing with in mind as I undertake and eventually publish my research. I will pseudonomise sources, although this will have to be balanced by the necessity of maintaining appropriate conventions of citation for my field. And I will continue discussing, with peer reviewers, with colleagues, with archive and university officials, the appropriate course to take in the specific contexts that may (or may not) arise.

There is, it turns out, no simple concrete answer to this sort of ethical question, and nor should there be. But I think it is helpful for me to acknowledge that, throughout this process my sensitivities and consequent decisions will be shaped, in part, by my awareness of my own willingness to share my family’s medical history in public. If I am unwilling to discuss certain details of my own family’s situation, including both the patients and carers, in public, how much can I ask of the families of the men I am researching? The answer is, at the moment, I don’t know, although I suspect it will change over time. However, I can say that my personal experience has re-emphasised for me the importance of the project I will be undertaking. Because to fully understand medical care-giving, whether historically or today, we must acknowledge and understand the role, and consequent sensitivities, of the family.

Curioser and curioser

One reason for the recent hiatus in my posts on here is that, a little while ago, I fell down a metaphoric rabbit hole.

What literally happened was that I received an e-mail informing me that, if a grant application for which I was in the process of applying was successful, I would have to complete an ethical review before the project began because (and I quote) the project ‘involves any personal stories (even if the person is no longer alive)’.  This prompted me to enquire whether this review was necessary because the project’s outputs* were to be broadcast rather than published or if this was true of all projects involving personal stories.  It turns out that this requirement is true of all projects involving personal stories of all, including those who have been dead for less than 100 years.  I was completely unaware of this fact and, as a result, have been scrambling to apply for a retrospective review for my research project which has formally been running for 18 months (ethical reviews are supposed to occur before the project actually starts).

The result has been that I find myself tangled in something of a surreal mess.  How, for instance, do I answer the question ‘Will participants be taking part in the research without their knowledge and consent?’? The subjects of my research are dead.  They are, by definition, unable to give consent of any sort, let alone informed consent.  Is the archiving of the material I am using enough to presume consent on the part of the subject?  Even when the donor of the material is a descendant rather than the creator of the material?  I have always assumed this to be the case, not because of any ethical review carried out into my research methodology but because archived material comes under intellectual property (IP) protocols.  As a result, I need to get the necessary copyright clearance to actually publish anything I use from archival sources and copyright passes on to the descendants of the creator of the document.  This is why so many acknowledgements in historical monographs contain phrases like ‘Every effort has been made to contact the copyright holders of the materials quoted’.  The further away from the date of donation we get, the more tenuous are links with the copyright holders and many archives have lost touch with the holders over the years.  Most archives have in place a system whereby material can be used even if direct permission has not been gained but every effort has been made by the author to gain it.  Such efforts can be quite complex.  For instance, the copyright of personal letters held by the National Archive (NA) remains with the descendants of the writer.  Official documents (anything written for a government department or agency) comes under Crown Copyright.  So a letter from a disabled ex-serviceman to the Officers’ Awards branch of the Ministry of Pensions has a private copyright holder who must tracked down, while the response from the official is easily cleared through Crown Copyright.

All of which is possibly fascinating but a matter of IP, not ethics.  And while it helps to address concerns over the misrepresentation of archived material, it doesn’t answer the question of how informed consent to participate in a study is to be given by the dead.  All the protocols I have read around the subject (data protection, informed consent, verbal informed consent, reimbursement and low-risk observation) deal with living subjects only, raising issues which certainly have relevance for those using oral histories but having little to say to someone whose work is entirely archive-based.  So I am going to have to send my form off to the review committee and hope for the best.  And start seriously considering shifting my research focus to the Napoleonic Wars, or possibly surreal children’s literature.

*Apologies for the use of bureaucratic language.  A month of writing grant applications has had a bad effect on me. Normal service should hopefully resume shortly.