I’ve been invited to take part in the UK Biobank. It is project to collect genetic information from a hundreds of thousands of people in order to do research.
I’ve found trying to make my mind up whether or not to take part very hard but in the end decided not to do so.
Whilst the benefits of this projected research sound so laudible, I just cannot get over the civil liberties problems of joining in. I’m being asked to trust researchers and government officials decades into the future and that’s something I just can’t bring myself to do.
I don’t believe that any researcher today can make definitive promises about the ethical standards of researchers in the far future and to claim to do so is to mislead. I also think that the wool is being very gently pulled over people’s eyes with phrases like “genetic material”. That’s code language for DNA and this is an invitation to give a government agency my dna without any control over what they do with it.
It also seems to me that participants are being asked to consent to research without being able to make any judgement about what kind of research they are consenting to take part in. That’s not informed consent, it is ill-informed consent and it does not seem to me to be ethical.
So, with some reluctance, my answer is no. What would you do?
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.
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
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.
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.
Have you seen Heroes???? Sounds like a sneaky plot to find more 🙂
I have not seen Heroes. Is it about eugenics?
Ah. It has a hint of eugenics. Part of the plotline involves some form of research into the DNA of people with supernatural powers!
Ah, I see why you associated it with me.
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.