Bio Bank Big Brother?
George Orwell | 19.06.2008 12:49
Evidence that the NHS and Department of Health are colluding with private concerns to undertake a database of personal information on the health (and more) of 500,000 people in the UK. Not only do they want access to medical records, they are seeking to perform "tests" on those approached.
A letter dated 9 June, advised me that I had been "selected" to participate in the UK Bio Bank Research Project.
It stated that my personal details had been supplied by the NHS. these included name, address, date of birth and GP's name. This information had been passed on to a private company. They allege it does not constitute a breach of the Data Protection Act - I contend it does.
The company, UK Biobank Ltd, is linked to Wellcome Trust, so a business involvement exists and there will be commercial interests in information gleaned.
The details of the "research" stated I am to attend a 90 minute visit to an "assessment centre" where I would undergo "medical tests" which would include blood and urine samples. They continue to say they would want access to ALL my medical and health records. In addition, they would ask me questions and say, "It is possible that you might be slightly uncomfortable with some of the questions asked". What are they up to?
Trying to reassure people they state, "The risks of participants suffering harm as a result of taking part are minimal and UK Biobank has insurance in place to provide compensation for any negligent harm caused by participation". So are they envisaging drug trials in this? How is it the NHS and Department of Health are involved in this activity and selecting particpants? Is this not unethical and possible illegal for NHS to pass on personal details of people for such a scheme?
Needless to say, there are the usual "assurances" about confidentiality- I wouldn't bank on it. Even if they don't succeed in losing data, I cannot believe that this will not be passed on for commerical use.
What is the relationship betwen UK Biobank Ltd and NHS/Government? What financial arrangement exists for all information transferred to this concern?
I shall not participate and advise others to do the same.
It stated that my personal details had been supplied by the NHS. these included name, address, date of birth and GP's name. This information had been passed on to a private company. They allege it does not constitute a breach of the Data Protection Act - I contend it does.
The company, UK Biobank Ltd, is linked to Wellcome Trust, so a business involvement exists and there will be commercial interests in information gleaned.
The details of the "research" stated I am to attend a 90 minute visit to an "assessment centre" where I would undergo "medical tests" which would include blood and urine samples. They continue to say they would want access to ALL my medical and health records. In addition, they would ask me questions and say, "It is possible that you might be slightly uncomfortable with some of the questions asked". What are they up to?
Trying to reassure people they state, "The risks of participants suffering harm as a result of taking part are minimal and UK Biobank has insurance in place to provide compensation for any negligent harm caused by participation". So are they envisaging drug trials in this? How is it the NHS and Department of Health are involved in this activity and selecting particpants? Is this not unethical and possible illegal for NHS to pass on personal details of people for such a scheme?
Needless to say, there are the usual "assurances" about confidentiality- I wouldn't bank on it. Even if they don't succeed in losing data, I cannot believe that this will not be passed on for commerical use.
What is the relationship betwen UK Biobank Ltd and NHS/Government? What financial arrangement exists for all information transferred to this concern?
I shall not participate and advise others to do the same.
George Orwell
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