Monday, December 12, 2016 5.00-8.00pm Kelvin Hall 1445 Argyle Street, Glasgow G3 8AW Attendance is free but registration is required through Eventbrite. What are Museums For? Public Lecture by Dr M…
Attending conferences is still a new experience for me. The thought of gathering in a pointedly large building with hundreds of people (some known only as a name from the spine of some illustrious tome) remains daunting. I wonder whether there is valuable research to be done in this area? Perhaps a thoughtful analysis of the relationship between anxiety levels suffered by PhD student and the number of letters succeeding the name of the academic engaged in conversation?
Informed consent and genetic collections
In June of this year, Edinburgh played host to 700 delegates at this year’s International Association of Bioethics World conference. The Conference was a fantastic success with inspiring keynote speakers including bioethics reigning Queen (all hail), Baroness Onora O’Neil. The team from Edinburgh University put together fantastic social events including the HeLa play and the Ceilidh which was held in the beautiful newly refurbished Edinburgh assembly rooms; it was a rip-roaring night of dancing, whiskey, and of course, haggis, neeps, and tatties.
For me, the week was dominated by talks on informed consent and data. Whether it was my shuttered focus on the topic or the ethical ‘sexiness’ of the subject within academia at this time, it seemed as though everyone was talking about consent in some form: whether it was consent for vulnerable individuals (Mangadan-Konath); or arguing for the removal of consent for the use of secondary data (Ballantyne).
The use of genetic data also proliferated throughout the conference. Some of the highlights were hearing Cunningham-Burley talk about public engagement with large data collections, Labude giving a much-debated paper on relationships between donor and researcher, and talks on the conference theme of data as a ‘public good’ (noun) and for the public good (verb) which weighed in on debates on genetic data collection.
A personal highlight was meeting Jane Kaye, director at HELEX in Oxford and hearing her speak about the concept of dynamic consent. Dynamic consent has a structure that covers both the complicated ethical and legal requirements for biobank data collection and the added bonus of integrated participant involvement. I believe the dynamic consent Jane and her team are proliferating is paving the way for a future unified consent model.
The fantastic thing about my first conference was how eager every person was to talk about each other’s research. Everyone was very enthusiastic, and it was extremely infectious.
“I left the end of the week absolutely shattered, not just from listening and contributing, but from coming down off an academic high.”
The debates and topics pushed me to consider possibilities I hadn’t realised and discover the excellent work being done in bioethics across the globe. All the delegates were from vastly diverse backgrounds; from the very practical (doctors, lawyers) to the theoretical (philosophers, concept academics) the combination of the two was interesting and at times tense which only added to the engaging atmosphere.
Now to the important stuff…
The food: yes the food was great, some highlights were the mini croissants, the haggis in a bowl and the pack lunches, which I think everyone will agree, were fantastic. They not only brought feelings of nostalgia from school lunches but also added to the fun of feeling like we were all on a giant school trip. Nothing quite tickles me more than seeing distinguished academics comparing crisps and sandwiches from mystery brown bags.
The Drink: but forget the food – beverage wise the event was stocked with booze, booze, booze; and more coffee and tea than you could shake a stick at. Although my preference for a milky hot chocolate went unsatisfied I won’t complain; I’m still too much of a child to handle coffee and tea feels like I’m playing into a British cliché.
The Ceilidh: swinging round my poor colleague Dominic until he was about to pass out was a great way to relieve some of the conference fog. I had the pleasure of discussing Guinness with Baroness Onora O’Neil for a short time and was truly flustered from the encounter – what an inspiring lady. Relaxing by the ceilidh dance floor I spotted a true Scotsman in the dance troupe, let’s just say I was sitting at the wrong height when he passed by, kilt fluttering in his wake….
At the end of the conference I felt inspired, I felt pumped; I was ready to write my thesis in a week and march into my viva voce within the month! However, I had a strange case of what my colleague terms ‘post-conference flu’ which incapacitated me for the following few days… so maybe the viva can wait a couple of years.
Until next time IAB, see you in New Delhi, 2018!
Big thanks to Graeme Laurie and his team for making it such a tremendous experience.
Constellations are human constructions created in mankind’s attempt to understand our environment, to develop our knowledge, and to make a seemingly infinite universe comprehensible to the human brain. There is nothing in nature, apart from a level of relative physical proximity, to suggest that these stars are in any way connected. Constellations exist because we mapped them out, like the chart of Orion below.
Chart of the constellation Orion, engraving. Wellcome Images.
Collections, like constellations, are an attempt to find or create meaning, to map out human knowledge. They draw links and make connections. Collections, archives or genetic databanks for example, reflect a particular topic, requirement, perspective on history or, sometimes, simply the proclivities of a particular collector (like the Collections of William Hunter here in Glasgow). ‘Collections’ is also the unifying theme of our Leverhulme-funded research group. We are all working with pre-existing collections, in archives, museums, and records; across textual, visual and oral mediums. At the same time, you could also say that we are building new collections, or constellations, each project bringing together different elements (you could say ‘stars’) that haven’t been considered side by side before, in an attempt to configure new understandings of human bodies, minds and communities.
Into the early modern period it was believed that the stars had a significant impact on human life, in the broadsheet below the Renaissance physician Theodericus Ulsenius (Dirk van Ulsen) claimed that an astrological conjunction in 1484 was responsible for the onset of pandemic morbus gallicus (the French disease, syphilis) in 1495. Perhaps even more crucially, the astrological configurations under which you were born were believed to influence your personality and your destiny, thus Shakespeare described Romeo and Juliet as ‘star-crossed’ lovers.
Broadsheet on morbus gallicus with text by Ulsenius and woodcut ascribed to Dürer. Wellcome Images.
As the stars were once thought to impact on human life, collections continue to impact on the work of anyone engaged in research, regardless of discipline. We need to be constantly aware of how, why, and by whom a collection was constructed. What connections were they drawing? Or not drawing? Where human subjects were involved, as in genetic data collection, was their consent obtained (and, if so, how)? How did these subjects impact on the shape of the collection and the results it can produce? Like their astrological counterparts, collections are complex configurations.
From: Petri Gassendi, Institutio astronomica (London, 1683). Wellcome Images.
‘Human constellations’ does not only denote the idea that collections are created by humans, it also refers to the idea of communities, of constellations of humans. This includes the wide variety of social groups which we are investigating, such as modern and pre-modern patients, early anatomists, religious and ethnic minorities. However, the term also refers to our own constellation, our research group, as well as the others, (museums, hospitals, research centres) which we interact with both within academia and beyond it. Yet, looking at our Collections group, what possible connection can there be between research into medical confidentiality and domestic violence in the twenty first century and a project on the emotional history of sixteenth-century syphilis? Similarly, how could a project on the collection of genetic data and a researcher looking at a collection of eighteenth-century anatomical art ever find a common ground to build on together?
On closer consideration the common threads begin to appear between some of the projects including medical humanities, ethics, and legal practice. Nonetheless, the most striking thing about our group remains its diversity, the differences between our projects. And it is this difference that is our greatest asset. By sitting down together and discussing our separate research projects we are attempting to map out new constellations on the themes of collections and collecting, as well as on the other themes that we share. Alongside this we are working to exchange and develop our methodologies and perspectives. Talk to someone outside of your research area and you can obtain a whole new perspective on your topic. Someone who looks at current legal practice might ask a question of early modern law that you might never have considered.
On first glance, we’re an unlikely constellation. But humans have drawn lines in the sky and connected seemingly random dots before, and these constellations have helped travellers find their way through the ages. We are exploring what and how humans collect, and how we analyse the results of these processes. Through these investigations we hope to draw out useful maps, new insights into these questions. Here we are trying to grow a constellation that belongs, and contributes, to a bigger astronomy.
Constellation of Draco (detail), Persian MS 373 (f.12 recto), Wellcome Library London. Wellcome Images.