UK Biobank

I seem to have reached a certain time in my life; a time when everyone appears to want access to my personal and private information. If it isn’t the local council asking to poke about in my house for the purposes of their housing condition survey, it is the Department of Health and their associates in the UK Biobank project wanting access to my health records and bodily fluids. It would seem, now that I am of a certain age, I’ve become interesting…

The UK Biobank had slipped under my radar up until now – when both I and Mrs L received invitations to attend a provisional appointment for the purposes of an initial assessment. While I have no problems generally with epidemiological studies over decades – such as this one is – equally, I have no particular desire to be involved, just as I have no desire to participate in any survey about anything. And, please, before some socialist comes along and points out that I have some sort of civic duty to become a guinea pig; this is voluntary and I have no such civic duty, so kindly resist the overwhelming temptation to lecture me, you’ll only get an acid response.

As participation is entirely voluntary, I have cancelled the appointment. In part, because I will no longer be living in the UK and not least, I am yet to be convinced that my personal and private information will remain personal and private; This, from the information leaflet:

Participation involves a minimal risk in relation to the use of personal information. Great care will be taken to ensure the confidentiality of all data (see below), and the risk to participants of a breach of confidentiality is considered very low.

And:

UK Biobank has put a number of rigorous procedures in place to protect the confidentiality of participants. These include:

• Keeping information that might identify individuals (such as name and address) separate in UK Biobank’s data bases from other information
  about participants.
• Computer security to block unauthorised access (for example, by “hackers”) to the computers that hold personal information.
• Access to personal information is restricted within UK Biobank, and all
  staff sign confidentiality agreements as part of their employment
  contracts. 
• Data or samples provided to researchers will not include personal
   identifying details.
• This should prevent identifiable information from being used – inadvertently
  or deliberately – for any purpose other than to support the project.

Well, yes, but this is the Department of Health we are talking about, so I view this assurance with some scepticism. I have no faith that any government department will safeguard my personal information. Consequently, I am disinclined to give them any more than is absolutely necessary.

So, how many other old codgers out there have been invited?

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Update: This makes interesting reading. Just as well I declined. I’ll be keeping my genes to myself, thankyou very much.

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Update: Mrs L was livid when she opened her letter of invitation. Although, like me, she is annoyed at the persistent attempts at data mining that are going on, she was particularly incensed that these people had made an appointment before asking if it was okay and did she want to volunteer. This piqued me, too, but I rather skipped over this aspect in the post. Generally, in a polite society, if you want someone to do you a favour, then the done thing is to ask nicely and if they say yes, then and only then, do you start making appointments. Mrs L isn’t going to bother cancelling hers; she is simply not going to contact them and not going to turn up. Her attitude is that it is their doing if it inconveniences them – or, to put it bluntly; fuck ’em!