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
- Taking part...involves.........agreeing to your health being followed for many years
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.
- It is possible that you may be slightly uncomfortable with some of the questions asked or measurements made.
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 ..........insurance in place to provide compensation for any negligent harm.......
- Computer security (procedures) to block unauthorised access
- Staff sign confidentiality agreements
- 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.
I do have concerns - joking aside - so although I'd like to help out, I'll have to give this some serious thought.