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?
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