Your body, your consent?

The word ‘pathology’ tends to be associated with macabre images of a sociopathic professor hunched over a decomposing cadaver in a windowless dingy basement of a research institute. But today my view of pathology was totally transformed and it was revealed to me the effervescent and constantly evolving nature of the deeply intriguing branch of medicine.

With the aspirations to study medicine, a group of school friends and myself were lucky enough to attain places at a two-hour course that encapsulated some of the many ethical issues that surround organ donations, research and consent. It took place at the Hunterian Museum in Holborn, a fascinating venue that showcases historic specimens and preparations from surgeon John Hunter’s original collections, as well as other specimens acquired after his death. According to the curator, Hunter managed to obtain the majority of his specimens illegally from ‘corpse thieves’ who exhumed bodies and sold them to people with an enthusiasm for that sort of gift…

Apart from the morbid opening that only confirmed my preconceived ideas of pathology, I soon discovered the other, less gruesome aspects. Facilitated by pathologists, we were able to meet ‘real-life’ pathologists rather than the fictional characters depicted in BBC crime dramas. The presenter of the talk told us about the four major disciplines of pathology: chemical pathology, haematology, histopathology and microbiology. The majority of pathologists’ time is not spent hunched over a decomposing cadaver in a windowless dingy basement of a research institute. Most of work is related to diagnosing disease of people. Did you know 70% of diagnoses made involve pathology? I didn’t. Pathologic diagnosis involves not only post-mortems, but also any examination of human tissue including from blood tests, urine samples and biopsies. So virtually everyone has to some extent been examined by a pathologists… and we haven’t even died yet…

So we had an ice breaker of true and false questions and the winner got Malteasers. We were introduced to the Human Trust Authority which was established in 1961. They initially assumed consent of human tissue unless explicit objection was given from the patient or family. However this was revised in 2004. This revision was prompted after court cases were brought against pathologists when it was unveiled that thousands of human tissues were being stored and ultimately forgotten about. This seemed disrespectful to the deceased and their families, although not illegal. The new legislation states that human tissue can only be used with informed consent from patients or families.

We then split into seven small groups along with pathologists or another professional with experience in the sector. Presented with a fictitious scenario of ‘John and Jane’ whose baby may or may not have a the gene for Huntington’s disease, we discussed within our groups whether anyone in the family should be tested and, if so, who. Also we considered the implications on other family member, such as the grandmother who didn’t want to know if she had inherited Huntington’s. The possible scenarios and questions that arose were never-ending, but extremely thought-provoking. Without concluding, we moved onto the next questions that were broader rather than make-believe situations.

What is human tissue?

At first glance it seems like a straightforward question; consult Google and you’ve found your answer. But what the question was really prompting was discussion as to whether all human tissue was ‘equal’. Does urine have same value as the heart? Or the face? And should human tissue be donated or tested with anonymity so the person is untraceable? But what if a disease or faulty gene is identified? Do you notify the individual or respect their possible wish of ignorance? Once again our group came to no formal conclusion because of the prolific questions that caused our conversation to diverge immensely from the initial question, ‘What is human tissue?’

What are your views on organ donation?

Possibly more widely debated, this was an equally thought-provoking question. The general consensus was that consent should be solely the donor’s, not the family’s. We did contemplate exceptional circumstances, such as if your family member’s face was being donated for a face transplant. Would that be a bit weird for the family to have their loved one’s face ‘reused’? A little insensitive? But on the other hand a face is fundamentally the same as a kidney, liver or lung, right? It is only an intangible emotional attachment to a face that makes it supposedly different, so should it be treated as an exceptional circumstance?

And then we came to the opt-in or opt-out dispute. Wales have recently adopted the opt-out system whereby organ donations are taken unless you specify otherwise. On the whole we agreed this was a smart method to make organ donation more accepted and normal. If an individual hasn’t really thought about organ donation or is unsure, we thought it is more likely they will eventually donate their organs with an opt-out system in place. Also the system still respects individuals’ right to consent.

Since 2011, those applying for a drivers license are obliged to answer a question about joining the organ donation register. It is part of attempts to increase opportunities to sign up. Once again we agreed that this is a great way to make people think as soon as possible. It also offers the option to state specific body parts you wish to donate, increasing the flexibility of organ donation and thus the number of people willing to sign up.

After an hour in small groups, we reassembled as a whole and summarised our opinions. Like our group, most questions proved to be inconclusive, with too many ethical questions arising to offer solutions to everything. Personally I think we get transfixed on finding solutions and ideal responses to dilemmas that will never we resolved. Maybe my response is pessimistic, but I feel it is impossible to make all parties happy and every ‘solution’ will have flaws. Making exceptions is tricky and subjective so would it be better to agree to disagree sometimes? I genuinely don’t know…

We proved to be a rather harsh audience as a unanimous vote at the end of the talk voted that those who refuse to donate their organs should be exempt from the replacement list. Well, that’s a whole other minefield… I’m going to bed.

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