Brain Donation: Opt-in or Opt-out?

brain donation should be the default option

In today’s Independent there was an article about a new report calling for increased levels of brain donation, and the ability to ignore the requests of family members if a deceased person has already asked to donate their brain.

My Personal Experience of Brain Donation

On 26th December 2012 my father died due to complications connected with Alzheimer’s Disease. Several months before his death he had asked me if there was anything that could be done with his brain. I explained that there were tissue donation programmes which could use his brain to learn more about Alzheimer’s disease which could help with diagnosis, treatment, and perhaps eventually a cure.

His response? “If they can find it, they’re welcome to it!”.

So, not long after his death the wheels were set in motion to have his brain and spinal cord removed, examined and stored for research.

My feelings about this? Pride.

I wasn’t sad, upset, angry or anything else. It just made me immensely proud that my father had made this decision.

Why do brain banks need brain donations?

The scientific and medial community don’t fully understand dementia – whether Alzheimer’s, Parkinsonian, or any other type. We know a lot more than we did 10 years ago, but not enough to truly understand the diseases and get to grips with them in order to find a treatment or cure.

By studying diseased AND normal brains (and comparing the two), researchers can begin to understand and identify the mechanisms which cause disease, why it happens in the first place, and how to stop (or perhaps prevent) it.

The more brains that are studied, the better the chance of finding a treatment or cure that works for everyone.

Emotions running high

I spoke with Petrie Hosken on LBC on 1st June about this, but rather than focusing on the importance of tissue donation – a lot of those who hit out at the suggestion that more brains should be donated tended to be saying “it’s my brain, I should have the right to decide what happens to it”, while in the same breath saying that the feelings of the deceased loved ones had to be taken into account, and must be valued above all others in the minutes, hours and days after a loved one’s death.

You can’t have it both ways.

In my view – there is no way that relatives should have any power to reverse a loved one’s decision about tissue donation – unless they were not of sound mind when they made the choice.

Although one’s gut reaction to taking a loved one’s brain out of their skull after death might be a little unpleasant, if you look past the gut reaction just a little, then surely it makes sense to always opt for brain donation?

By donating brain tissue the deceased is making a positive impact on the world long after they are gone. In fact – if research on that brain tissue ended up improving treatment for a disease like dementia – their donation could end up improving (and perhaps saving) the lives of hundreds of thousands of people – including the friends and relatives they leave behind.

If the brain isn’t donated? Then one of nature’s most incredible objects – one of the most complex and intricate in the known universe – ends up rotting in the ground or being incinerated.

Surely, it’s a no-brainer? (Pun intended).

Status quo bias

So why do we get so upset about this topic? I think it has a lot to do with our outdated “opt-in” tissue donation system.

We grow up in a culture where we can decide to add our names to a list which will allow doctors and scientists to make use of our organs.

We have an 11% consent rate.

If you were born in Austria you would grow up with a different mindset. There they have an “opt-out” system. By default your organs are made available to those in need of transplants etc. but you have the option to opt out of the scheme.

The Austrians have a 99.98% consent rate.

Is that because Austrians are kinder, more thoughtful, and altruistic by nature? Possibly. (It’s not this. Culturally Austria and Germany are similar, but Germany’s opt-in system yields a 12% consent rate!). But the most likely reason is that we humans are inherently lazy.  Most people accept the default option and never bother to take action to change it, unless they feel strongly about it.

The best option here would be implied consent with an option to opt-out. I’ve discussed this before in a post about Jennifer’s Choice.

Brain donation options

If you’d like to sign up for brain donation – then you can contact any one of the UK’s brain banks to find out more, and to sign up. You’ll need to do this until we change our system to an opt-out, rather than an opt-in one!

It doesn’t matter if you die with a healthy or a diseased brain – it will be of use in helping future generations – and potentially your loved ones and friends.

 

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