- Susan Elaine Jones
The Other Human Tissue Act.
Informed consent, organ donation and ethical skeletons from 1961.
I have recently been persuaded to
restart Dying for Life activities, and started a Bones Drawing Group by zoom as part of this. As I talk about this with people, about three years of pent up discussions on the ethics of handling human bones is spilling out of my brain. I have about four proto-papers in my head which I haven't yet written. So I'm going to brain dump here so that when I do get a bunch of people together around some bones, I don't spew a Hamlet-level soliloquy.
Obviously, we'd all prefer to only handle the bones of people who knew it would happen and volunteered for the job. However, the Human Tissue Act of 2004 (HTA 2004) made many ways of working with human remains that are less than 100 years old virtually impossible outside of licenced institutions, which effectively means places with deep pockets for the legal paperwork.
That is fine if you're the Royal Shakespeare Company or Bodyworlds - though it is still far from straight forward as some of the public will still shout about ethics and morality - and that is shout not debate unfortuately. But it is useless for the average museum or even anatomy department who don't have £3000 for the fee and £20,000 for the salary of someone to handle the paperwork.
Unfortunately, that means most human remains out on display are over 100 years old, and so were obtained under the auspices of the 1832 Anatomy Act, or in some cases from before that, in the time of body-snatching. Most people are aware of the old issues with stealing corpes from graves for medical schools, and the famous case of William Burke and William Hare. Who I mention mainly to squash in an aside of chatting to a museum curator who had to clean up Burke's skeleton for display in the National Museum of Scotland, and whose main comment was "he had very fatty knees". Also that these infamous criminals are still subject to debate as some residents are trying to close down the Burke and Hare lap dancing bar in the "pubic triangle" of Edinburgh.
What we have all missed out on is the OTHER Human Tissue Act. Previously, the 1832 Anatomy Act focussed entirely on whether the next-of-kin (family only) wanted the body or not. (And yes, there is a BIG issue on the costs of claiming bodies disenfranchising the poor of proper rights. That's a different essay right there.) The thought was, if no one claims the body, then there is no one carrying the pain of mourning someone whose body is being cut up for medical teaching. Personally, I can see the humanity in that. The Human Tissue Act of 1961 moved the issue of informed consent of the donor to the forefront of discussion.
And the fact that is has been superceded drives me crazy mad furious!
Because no matter how many discussions, no matter how much I talk about it, I could not persuade my parents to accept my wishes, if the circumstances arose, to be an organ donor. (Please be an organ donor. Proactively register your decision with the NHS. And discuss it with your relative, as they will be asked, and they can veto your wishes!)
It is such a fundamental, deep desire in me, and yet for most of my life I was aware that my wishes would be ignored as, if asked, my mum would say "oh no, leave her alone". It was a major reason I got married (and a regret of the divorce) - I had chosen my next-of-kin, and he would respect my wishes. When writing my will, I asked the solicitor for advice on assigning a next-of-kin, but realistically my parents could just tie them up with legal arguments for the few days my organs would be viable. Never mind my hope that if I can't be an organ donor, then I can be dissected, and also for my skeleton to be articulated for teaching or, preferably, hanging about in a museum. It's what I've mostly done in life, and I'd really wish to continue doing that!
So, I LOVE the Anatomy Act of 1961. Because it gave agency to the owner of the body. The first paragraph reads:
If any person, either in writing at any time or orally in the presence of two or more witnesses during his last illness, has expressed a request that his body or any specified part of his body be used after his death for therapeutic purposes or for purposes of medical education or research, the person lawfully in possession of his body after his death may, unless he has reason to believe that the request was subsequently withdrawn, authorise the removal from the body of any part or, as the case may be, the specified part, for use in accordance with the request.
It came about because people were trying more and more to decide what was done with their OWN remains. A trend that had started with anatomists trying to use volunteers for dissection, notably Dr Macartney in Dublin in 1830s, the Paris Mutual Autopsy Society of 1872, through Mutual Brain Clubs in the 1900s (read Severed by Francis Larson, pages 214-235), and culmunating in people fighting to give their body parts for organ donation and for dissection. Yes, lots of people just like me.
In 1960 they worried that enough people wouldn't volunteer their bodies, and noted that medical schools "would be in a sad position if it were not for the poor and the friendless upon their deaths" (Dr Dickson Mahon, MP for Greenock, Hansard 1960).
Contrary to their worries, medical schools do receive enough donations - though they are always happy to have more donors sign up (e.g. Cambridge University details here). That tells me that there are loads of people out there like me, but with more understanding families. So, since 1961 there was a legal, documented source of human remains who volunteered to have their bits stick around and be used.
The other effect of this legalised donation is it slowed, if not fully halted the more distasteful and less ethical practice of buying corpses for skeletonisation for medical teaching from the poorer areas of the world. Asia, especially India, was a favourite place for medical suppliers to buy corpses from poor families to import to the UK. And though you could argue there was some degree of clarity as to what would happen to the body, there is the question of how much choice people in poverty really have when offered such deals. This is why so many anatomical skeletons are not of European subjects, and leaves quite a distasteful feel of imperialism when considering their origins.
But, because of the Human Tissue Act of 2004, we mostly are denied access to the documented recent volunteered bodies. Again, there are good reasons why the law was changed, as a few doctors overstepped boundaries and caused outrage to the families and next-of-kin. However, I would class the specific difficulty with using recent anatomical skeletons as an unfortunate and possibly unintended consequence of the HTA of 2004.
It also means if I do manage to get dissected, the medical school will be keen to dispose of my remains within a few years as the paperwork to keep bits like an articulated skeleton now is very tricky. Even in the United States, that has more flexible legal frameworks, getting yourself hanging in a museum is tricky. (Research Carol Orzel for the best example of modern informed consent way of getting into a museum.)
So, unfortunately, I am unlikely to get my wishes fulfilled as far as my own body is concerned. And that has happened to numerous other people who tried, and have now been thwarted in offering their remains in the best standard of informed consent. I wish this was a more known and understood part of our history, and that more people knew about the social and ethical changes that brought the other Human Tissue Act into being.