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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.