“In the last 4 weeks, have you experienced any feelings of depression or apathy?”

(short pause)

“No.”

I’m a terrible liar. I’d recently had a fall out with a friend which had been all-consuming, and I’d spent the subsequent months feeling like I was grieving. In the last 4 weeks, I’d definitely experienced feelings of depression and apathy, but I knew this had nothing to do with Huntington’s Disease (HD), just like the previous year I knew the depression was a result of the break-up I went through. For the purpose of the study, of course I hadn’t experienced any feelings of depression or apathy.

Except how certain could I be that my reaction to these two isolated events weren’t exacerbated by the onset of HD symptoms, symptoms which can begin at the age of 30 and typically start with subtle changes to mood, personality, and depression? How certain could I ever be that the compulsive fixations I have on my tea towels being folded neatly have actually always been there, manifesting as neurodivergent behaviours instead of steadily growing in severity as a result of the aforementioned neurological changes? The question wasn’t asking me to determine the origin of the condition but simply its existence.

Huntington’s Disease is a genetic disease primarily affecting movement, cognition and behaviour. Symptoms increase over time and greater care and support is needed as it advances. There is currently no cure for HD and death typically occurs 15-20 years from when the disease is detected. Genetic testing is available to determine if an at-risk individual carries the faulty gene, of which there is a 50% chance of doing so. Enroll-HD is a global, longitudinal clinical research trial where participants attend an annual appointment to complete motor, cognitive and behavioural assessments, the aim being to develop a repository of clinical research data on HD.

Whilst my lie certainly poses ethical complications, there is also a problem with the framing of this almost tacit self-awareness in an a posteriori or descriptive way, particularly when those descriptors and scales aren’t shared with the research participants but are instead left to blind judgement. Can the depths of my apathy be measured in isolation? And what does the researcher’s interpretation of my blind assessment say about the power dynamics and biases within medical research? Whilst this inaccuracy in self-assessment is by no means unique to HD (any trip to the doctors involves some level of self-reporting), it calls into question the integrity of the clinical trial data, and ultimately any findings and conclusions arising from it. How many other seemingly well-intentioned participants in the early stages of HD fail to accurately identify or categorise these symptoms? And what impact does that have on future research and developments?

These research limitations cast doubt on the validity of any knowledge constructed within medical educational communities and raise potential problems with the concept expert, or teacher. Measuring psychological severity on a Likert scale is functionally useless as a subjective exercise without calling into question where our measure of psychological normativity is rooted; it excludes any wider socio-political context or individual circumstances. Perhaps my newfound lack of interest in going to work is less to do with clinical depression and more to do with the endless talk of proposed redundancies. These scales prompt deep self-reflection, inviting us to contemplate our existence and rely heavily on the soundness of our memory (ironically, a faculty you lose with the development of HD!); it begs the question of whether we can ever learn anything about ourselves without relating to others. Taking subjective experience and applying it to an evidence-based field, while ostensibly a positive tool which puts power into the hands of the patient, can have huge implications on the way knowledge is constructed; we are free to express how we feel without barriers, but only within certain parameters dictated by medical experts. This academic/patient hierarchy has come to be considered part of the ‘hidden curriculum’ within medical education (Coulehan 2005), to the extent that assessment tools have been developed to measure the degree of patient-centredness within medical education programmes (Haidet, Kelly & Chou 2005). Whilst this reasoning is taken to absurdity – I’m certain that enough patients have indeed experienced symptoms of depression for it not to be a coincidence – it does interrogate the nature of medical education and how much we can ever know; it highlights the inherent biases and hierarchies within research when considering who the gatekeepers of knowledge are and how it is disseminated within medical communities, and used to generate new theories and treatments.

Enroll-HD currently has 21,665 participants, so I’m hoping the white lie about my decline in mood will go unnoticed, and quite morbidly, become easier to identify and attribute to HD with time.

References

Coulehan, J. (2005). ‘Viewpoint: today’s professionalism: engaging the mind but not the heart.’ Academic medicine: journal of the Association of American Medical Colleges 80(10). 892-898. DOI: 10.1097/00001888-200510000-00004.

Haidet, P., Kelly, P. A., & Chou, C. (2005). ‘Characterizing the patient-centeredness of hidden curricula in medical schools: development and validation of a new measure.’ Academic medicine: journal of the Association of American Medical Colleges 80(1). 44-50. DOI: 10.1097/00001888-200501000-00012.