Banking On The Future

Many of you (of a certain age) may have received an invitation from the UK Biobank project to undergo tests which will be used to research cancer treatment, heart disease and diabetes etc. It sounds a worthy and altruistic scheme to get involved with. They aim to have 500,000 people to study but I wonder if they will get that many given that there is no financial incentive. (Not that I'm bothered but a couple of beers wouldn't go a miss).

However, a few details from their explanatory booklet provide some concerns.

  • We do not know anything about you and have not had access to your medical records
That's a bit reassuring given that I'd need to consent to some body having my details. They then request that written consent is given.
  • Taking part...involves.........agreeing to your health being followed for many years
Sounds like Desmond Wilcox should be in there with TV programmes every 7 years. ' Here we see Eric's piles are getting worse but at least his liver is still functioning.'

I was drawn to the section headed 'Are there any risks...'
  • Taking part...........should not cause you any harm..........The project aims to observe what happens to participants over the next few decades so that future generations can benefit.
So, if someone from the future is now reading this on the internet archives on their eyelid computer, please be grateful for those of us who gave so that your lives could be sneeze free.
  • It is possible that you may be slightly uncomfortable with some of the questions asked or measurements made.
Well as a card carrying member of the going-red-in-Helsinki-institute, there may be trouble ahead. As for measurements, I've had no complaints.

Then there is a small section at the end entitled 'What happens if something goes wrong?' I know we need to cover all bases here but this is getting a bit worrying.
  • The risks of participants suffering harm as a result of taking part are minimal in place to provide compensation for any negligent harm.......
Phew! That's OK then. But what of confidentiality - especially in the light of recent losses of data by various organisations.
  • Computer security (procedures) to block unauthorised access
  • Staff sign confidentiality agreements
However, there is this potential bombshell:
  • Insurance companies and employers will not be given any individual's information, samples or tests results and nor will we allow access to the police, security services, relatives, lawyers, unless forced to do so by the courts.
Given the constant erosion of our civil liberties in recent years, one wonders what kind of government we'll have in 30 years. This present administration has taken the piss for years so maybe another sample won't be missed. They only seem to want a drop of blood so I can't use the old Hancock 'a pint? that's nearly an armful' line.

I do have concerns - joking aside - so although I'd like to help out, I'll have to give this some serious thought.