Medical research compromised by new laws and budgets, doctors warn
Anonymity requirements may cause problems for researchers reusing
previously collected data |
Over zealous application of data protection law and uncertainties about funding are causing concern to medical researchers, according to the authors of recent articles in the BMJ and a response from the British Medical Association.
First, researchers reusing previously collected data encounter problems
if explicit consent needs to be obtained or complete anonymity ensured
(BMJ 2006;333:315–6). According to Robert Souhami, emeritus professor
of medicine at University College London, study populations for such
research can comprise thousands of people, some having moved away or
died. He suggests that regulatory bodies should accept that the law permits
the secondary use of data without explicit consent, provided that the
likely benefit to the public is demonstrably proportionate to the risk
of identification and any consequent distress caused. Otherwise, population-based
research in the UK will be damaged — an “own goal” at
a time when a national system of health records would give the NHS unequalled
opportunities for research to improve health.
Second, Jenny Hewison, a professor at the University of Leeds Institute
of Health Sciences and Public Health Research, warns that health research
is being compromised by ethics committees’ requirements that people “opt
in” to studies, rather than “opt out” (BMJ 2006;333:300–2).
Only approaching people who reply positively to a letter from their doctor
telling them about an opportunity to take part in a study can lead to
low response rates, wasted resources and research of limited validity,
she argues, and is only justified occasionally.
Third, in a response to the Cooksey Review of UK Health Research, the
BMA has voiced concerns that “cash-strapped” NHS trusts are
being tempted to use research monies for other purposes. They have also
asked the Government for clarification about an apparent cut of £300m
in funding as a result of proposals to combine the budgets of the Medical
Research Council and the NHS Research and Development Programme.
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Hospital Pharmacist