MSc Project - What's in a biobank

Hi All,

I hope this is ok to post.

As part of my MSc in Science Communication and Public Engagement, I’ve created a Choose Your Own Adventure story. It’s been made to help educate people on biobanks, whilst hopefully allowing people to have some fun on the way!

I’d really appreciate you guys giving it a go and filling in the feedback form at the end.
Please note: It’s best played on laptops/PCs and if left alone for too long it will time out, so best completed in one sitting. Dependent on choices made it should take 25-45 minutes.

What’s in a biobank?

Please feel free to ask me about anything you want if you have questions. I really do appreciate any time you can give.




That’s why we send our plans to an ethics committee.

Do they really have an “ethics committee”?

It depends where you live on what they call it, but yes, all clinical trials and biobanks have to go through an ‘ethics committee’ or in the US they call it an Institutional Review Board (IRB)

I found all that rather sinister; As if people can absolve their personal culpability by deferring their guilt to a shady committee of dark suits, almost certainly driven by avarice.

We did what we thought was right. It was approved by our ethics committee

My playthough had a run-in with the “ethics committee”. Bizarrely, they [the committee dark-suits] didn’t want me to let people know they were predisposed to illness unless the NHS would treat it.

It’s one thing to tell people about potential health conditions the NHS can monitor or treat… but telling people about health conditions the NHS can’t do anything about?

Sometimes the NHS won’t treat things because of money, not because they can’t. So just keep those people in the dark 'eh?

I hope this is fiction and not how it really works!

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I should probably play this game first, and now promise I will, but consider your quoted thought from the opposite direction. There are researchers everywhere researching and researching and researching. Finally they present their research to a medical journal or something. We can’t necessarily expect them to have considered, or even be aware of, every major ethical implication of their methods, research and/or outcomes. That’s why it’s good to have some standards applied by the oversight of an ethics committee that concentrates only on this angle, built on expertise. If research is returned from the committee with advice, it can result in making the researchers more aware of personal culpability they didn’t realise they had, rather than the opposite.

Standard critiques of commitees in general still apply.

In my time at the MJA, I flagged many an article for the ethics committee.


Not a problem around here, but be aware that the rightsholder to the name “Choose Your Own Adventure” is notoriously litigious, i.e. it’s a brand name protected by copyright law.

To protect your school, my advice is to use a more generic term like “interactive fiction” or “choose your path” to describe your story-game.


I thought that a bit too. I only played a bit, but the game is nicely done for an informative non-fiction teaching tool, and I learned what a “bio bank” was after several very wrong guesses in my head. IF can serve as a good tool for education and role-play to answer questions and allay common assumptions about a subject.

I remember when the “23-and-Me” kits became popular where you could send in a cheek scraping and they would report back where all your genetic ancestors came from. It sounds very cool, but in my brain I went “Do I really want to pay someone to send a company my DNA and have it stored in an archive where it could be sold to entities I may not even be aware of?”

Not that my bio-material is that important - I mean, my fingerprints are in the database since I’ve had jobs that required a background check. But I can envision a dystopian scenario where insurance companies might deny or adjust the price of healthcare coverage for someone if they had easy access to DNA and could predict they were genetically predisposed to specific high-cost illnesses. I’ve seen the movie GATTACA!

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Interesting take jkj_yuio! Severedhand is absolutely right, we go to ethics committees to try and make sure every moral question thought of has been answered. Studies only gain approval once all agree that the research is being done with the interests of the public in mind. The idea being to prevent unethical research ‘in the name of science’ from ever happening again, as it did when there was Nazi experiments conducted on twins.

That being said, I take your points onboard. If this is the view the game gives, it’s not necessarily the one I had in mind. However, it has got discussion going which really is the true aim of science communication.

As for the return of genetic results, perhaps again I was slightly unclear. It’s not about lack of treatment because of money, it’s about lack of treatment because there isn’t yet a treatment for condition. For example, we would never tell anyone about Huntington’s Disease or Multiple Sclerosis because there is currently no way to prevent it from happening and, if someone learned about having the gene for it, it could cause more distress than help.

Thanks so much for playing the game and giving your feedback, it’s really helpful!

Thanks Sam, really useful to know. Thankfully, the term is not used in the game itself, so I’ll just make sure any future posts/discussions don’t use the terminology