I’ve been away from St Mary’s for the last week or so travelling, so no time to write much. However, I did take a lot of photographs and thought I would post one or two things here which made me think. As usual, comments welcome. 
9 responses to “Biobank – an ethical question”
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I’ve been asked too. And I got so excited – you know how I love all things medical. My mind had already raced off into the realms of them finding that I had some mysterious disease… But now that you put it like that, I guess I’d better give it some more thought.
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I haven’t been asked. Radical foreign clerics must not be on the list.
I’d be hesitant to do it anyway. Too much information is being stored about us in anticipation of the day when it might prove useful. Best to keep your head down.
RR
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Eeek. I saw the phrase “Do you want to do something good today? Not just for yourself, but for our children and our children’s children?” near the top of the page and instantly the thought occurred, “what’s the potential cost? Where are the privacy controls?” Not as though anyone’s asked me anyway, but that sort of thing worries me from the outset too.
A little more investigation shows http://www.ukbiobank.ac.uk/faqs/confidentiality.php , particularly #5 etc; it seems too vague, just a gloss to placate the masses. I don’t want `computers unconnected to the internet’; I’d want a guarantee that they never will be, that no floppy disks or other methods will result in data coming off them, and that they’re well secured in a bunker somewhere.
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We’re involved. My sister-in-law first; she asked my husband; we discussed it and decided the potential for knowledge and research into – for example – the hereditary factor in clinical depression – made it something we wanted to do. Our sons have also expressed a willingness to participate. I personally don’t care about what happens to my DNA (other than its continuation in my family!) and if some good can come out of it then that’s just fine. I trust scientists every bit as much (or as little) as I trust anyone else.
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Have you seen Heroes???? Sounds like a sneaky plot to find more 🙂
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I have not seen Heroes. Is it about eugenics?
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Ah. It has a hint of eugenics. Part of the plotline involves some form of research into the DNA of people with supernatural powers!
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Ah, I see why you associated it with me.
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My wife I also each received one of the so called invitations today, my first reaction was anger over the wording of the invitation which by telling me I have a “provisional appointment” assuming I am gullible enough to fall for the use of false authority syndrome.
I am really concerned a lot of less literate people will not fully understand the “invitation” and assume it something they have to do.
What really makes my blood boil is the that even if you don’t want to take part you have to reply to get your name removed from the records, this raises real civil liberties issues.
The thing is if I had been asked to participate in I a nice way I would have been very keen to do so, however the whole tone of the letter stinks of authoritarianism and reminds me of the kind of thing the Nazis were doing in the mid 1930s.
If you get one of these invitation say no and tell them why — or better still rip it up.
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