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Viewing and consent

26 April 2012
By Ann Lingard
Ann Lingard is a writer and former scientist
Appeared in BioNews 654

In the pathology collection at the Surgeons' Hall Museum (SHM) in Edinburgh is the skeleton of a dwarf, or more accurately, 'an achondroplasic female'. When it was given to anatomist Professor John Struthers by a former pupil, nothing was known about the origin of dwarfism. Now we know achondroplasia is caused by a spontaneous but inheritable mutation in a gene located on chromosome 4.

James Jack, an assistant at the SHM, who retired in 1964, was also an achondroplasic. He was 'procured' as an assistant by Professor David Greig, who had a great interest in unusual skulls. Fortunately Jack must have had a sense of humour, for when Grieg died, Jack reportedly said: 'He didn't get me – and he's died!'

Also in the SHM is the skeleton of Janet Hyslop, who died in 1800 after her seventh pregnancy. At the suggestion of her local doctor, two eminent Edinburgh surgeons, Charles and John Bell, had driven down to the parish town of Penicuik to deliver her child by Caesarean section.

Why? Because her spine and pelvic region had been so utterly transformed by a lack of calcium and vitamin D she had become a medical curiosity. She was buried in a nearby churchyard, but she – or rather her skeleton – nevertheless ended up in Charles Bell's collection.

But the story of Charles Byrne, the Irish Giant O'Brien, who died in London in 1783, is probably better known. His skeleton, exhibited in the Royal College of Surgeons' Hunterian Museum, has recently been the subject of controversy. Should it be removed and buried at sea, as Byrne originally requested? (Allegedly, this request was in order to escape the acquisitive surgeons who clustered around his house, waiting for his death 'like harpoonists surrounding a whale' (1)).

These are just a few examples of the many exhibits in this country's great anatomical and pathological collections; bits of 'patients' (as the Collections' Manager at the SHM touchingly refers to them (3)). Originally taken as teaching aids or with a desire to collect 'difference', nevertheless they were obtained for viewing without consent.

Now, scientific techniques, especially in the analysis of genes and understanding of genomics, are allowing us to think about and 'use' some of the exhibits in different ways, both biomedically and sociologically.

Take Professor Marta Korbonits' work on Byrne's DNA. It has provided important information about the prevalence of acromegaly, a condition associated with gigantism, in County Tyrone, as well as alterations in the gene thought to cause it (2).

Brendon Holland, who has the same 'rogue gene' and is a distant relative of Byrne, thinks the skeleton should stay where it is: 'If he'd had available to him the care and concern that we're given today, I'm sure he would agree with me that this is the right thing to do' (4). Certainly, this altruism is what leads many people today to give their consent to their brains or whole bodies being used in medical and genetic research (5).

While a Visiting Fellow at the ESRC Genomics Forum in Edinburgh, I researched and wrote the human stories of several of the exhibits in the SHM. One of the main characters in my novel, 'The Embalmer's Book of Recipes' (6), is a mathematician and achondroplasic.

I am not alone. Poets, writers, artists and photographers – even sculptors and plastinators – have depicted people with genetic abnormalities in their work. Are we right to do so; is it ethical, or are we little more than voyeurs, like those who wandered around the anatomical museums and cabinets of curiosity?

As for the Collections, perhaps we shouldn't try to impose today's moral judgments on them. The SHM's Collection Manager has said of its use: 'There's an inter-connectedness between people - the surgeons, patients, pathologists, the family - and they're all colliding and ricocheting in all directions'. Perhaps we should add 'geneticists' and 'creative people' to this list, too.

Ann Lingard is author of The Embalmer's Book of Recipes (buy this book from Amazon UK or Amazon USA).

1) Royal College of Surgeons rejects call to bury skeleton of 'Irish Giant'
Guardian |  22 November 2011
2) How an Irish Giant and an 18th century surgeon could help people with growth disorders
Guardian |  11 January 2011
3) 'Janet's story', 'Stories of dwarves' and 'The Curator's Story'
Genomics Network: Tell them our stories |  24 May 2022
4) Doyal, L. and Muinzer, T. Should the skeleton of the Irish Giant be buried at sea?
British Medical Journal |  20 December 2011
5) Stories of brain, body and eye donors, and others in 'Donors' stories'
Genomics Network: Tell them our stories |  24 May 2022
6) The Embalmer's Book of Recipes
|  24 May 2022
9 July 2012 - by Dr Amy Strange 
If you can get past the gruesome eye on the cover, you enter into a world of love, mathematics, farming and death, woven together in Ann Lingard's 'The Embalmer's Book of Recipes'...
10 January 2011 - by Dr Lux Fatimathas 
UK researchers have identified the genetic mutation that caused an 18th Century Irish man to grow to a height of seven and a half feet. This was the result of a growth disorder called gigantism. Studies of four modern day Irish families also presenting with similar growth disorders, showed they too expressed the same genetic mutation....
28 May 2010 - by Harriet Vickers 
Our knowledge of biology has enabled us to move away from understanding to manipulating and influencing. As the authors of 'Contested Categories' write, we could be on the cusp of 'a bio-age, a posthuman future or an era of genetic programming'. But how does life science research translate into society? This is broadly the book's focus...
10 May 2010 - by Ailsa Stevens 
I'm going to come clean from the start. My experience of comics is limited to precisely one example: 'Preacher' by Gareth Ennis and Steven Dillon - the story of Reverend Jesse Custer, a beatnik Texan cleric who is accidentally possessed by a supernatural deity during a freak accident. Needless to say, the storyline bears little resemblance to 'Alisa's Tale' - the story of a young woman with a restricted growth condition known as achondroplasia...
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