Why we should not seek individual informed consent for participation in health services research

J Cassell; A Young

doi:10.1136/jme.28.5.313

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Research ethics

Why we should not seek individual informed consent for participation in health services research

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Consent and choice
Marion A Chester
Published on: 12 February 2003

Published on: 12 February 2003
Consent and choice
- Marion A Chester, Lawyer
Dear Editor
I read 'Why we should not seek individual informed consent for participation in health services research' with weary disbelief. The arguement made by the authors that UK citizens are members of the NHS and as such are required to give up their medical records and choice about whether to particpiate in research, displays a lack of understanding about the citizen's relationship to the NHS.
The id...
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Dear Editor
I read 'Why we should not seek individual informed consent for participation in health services research' with weary disbelief. The arguement made by the authors that UK citizens are members of the NHS and as such are required to give up their medical records and choice about whether to particpiate in research, displays a lack of understanding about the citizen's relationship to the NHS.
The idea that we are members of the NHS is laughable. Members of an organisation have expectations, rights and indeed obligations. However although the health service is funded by all tax payers - in effect the entire population, we appear to have few enforceable rights. No right to treatment. No right to an appointment at a convenient time. No right to say who can see our clinical records. No expectation that we will be seen promptly at the local A+E department if we are hurt. The vision offered by the authors, that we give up autonomy if we are lucky enough to be treated,amounts to a one-sided contract.
Yes, the NHS has a loyal following. Patients support the front line staff who do a fantasic job for little pay and who all too often put up with poor working conditions. On the other hand ,they are less than impressed with the managment of the service. All too often the administration of the health service lets us all down and indeed some initiatives have the effect of undermining the trust that patients can place in the NHS. Undermining both patient confidentiality and the limited autonomy we have within the service appears to be designed to cause a further loss of faith.
It appears that the authors believe that NHS services are a gift within their power to allocate or withhold as they please depending upon whther the patient is prepared to accept the conditions they seek to impose. The argument is not only nonsensical, but flies in the face of the oft stated government initiative to give patients greater choice and a voice within the NHS.
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