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EDITOR- On the 31st of March the BMJ reported on the House
of Lords Select Committee on Science and Technology Report
into Human Genetic Databases: Challenges and
Opportunities.1. It is only after reading the Report in
depth that it becomes clear that the recommendations would
lead to the establishment of an UK National Population
Collection, which would link identifiable NHS clinical
information on the 58 million people in the UK for genetic
research. The proposed UK Biomedical Population Collection
of 500,000 volunteers being established by the Wellcome
Trust, the MRC and the NHS, would simply be a test run for
this much bigger and more ambitious project. At the same
time as the Report was being compiled, s.60 of the Health
and Social Care Act 2001was passed. The linking of NHS
clinical data on this scale is now legally possible under
s.60 as identifiable patient medical information can be used
without consent for medical research, with the approval of a
Committee.
The adoption of the Select Committee’s recommendations would
lead to the incremental establishment of a population
collection without adequate public consultation and in
violation of international standards that have been set.
In the UK, s.60 means that individual consent for the use
of clinical data in a national population would probably not
be necessary. The Icelandic population collection has shown
that the standards that have applied for epidemiology cannot
readily be applied to genetic research on large databases of
personal information. Consent, or the possibility of being
able to choose if your clinical data is used for research
purposes has become the norm for population collections.
Along side this goes transparency, public consultation and
debate.
While this is an exciting project with enormous potential
for the UK in terms of healthcare, research and income
generation, we run the risk of becoming the pariahs of the
international medical research community unless the
standards that have been developed for population
collections are followed. The House of Lords Report is only
the beginning – the issues of public consultation, consent,
data security, access and oversight mechanisms of a
population collection need now to be fully explored and
considered. Let’s make sure we do it right, so that the
proposed UK National Population Collection is an example of
exemplary practice in genetic research, rather than another
Alder Hey and an embarrassment to us all.
Jane Kaye,
St. Catherine’s College,
Manor Road,
Oxford OX1 3UJ
A Population Collection by the Back Door?
EDITOR- On the 31st of March the BMJ reported on the House
of Lords Select Committee on Science and Technology Report
into Human Genetic Databases: Challenges and
Opportunities.1. It is only after reading the Report in
depth that it becomes clear that the recommendations would
lead to the establishment of an UK National Population
Collection, which would link identifiable NHS clinical
information on the 58 million people in the UK for genetic
research. The proposed UK Biomedical Population Collection
of 500,000 volunteers being established by the Wellcome
Trust, the MRC and the NHS, would simply be a test run for
this much bigger and more ambitious project. At the same
time as the Report was being compiled, s.60 of the Health
and Social Care Act 2001was passed. The linking of NHS
clinical data on this scale is now legally possible under
s.60 as identifiable patient medical information can be used
without consent for medical research, with the approval of a
Committee.
The adoption of the Select Committee’s recommendations would
lead to the incremental establishment of a population
collection without adequate public consultation and in
violation of international standards that have been set.
In the UK, s.60 means that individual consent for the use
of clinical data in a national population would probably not
be necessary. The Icelandic population collection has shown
that the standards that have applied for epidemiology cannot
readily be applied to genetic research on large databases of
personal information. Consent, or the possibility of being
able to choose if your clinical data is used for research
purposes has become the norm for population collections.
Along side this goes transparency, public consultation and
debate.
While this is an exciting project with enormous potential
for the UK in terms of healthcare, research and income
generation, we run the risk of becoming the pariahs of the
international medical research community unless the
standards that have been developed for population
collections are followed. The House of Lords Report is only
the beginning – the issues of public consultation, consent,
data security, access and oversight mechanisms of a
population collection need now to be fully explored and
considered. Let’s make sure we do it right, so that the
proposed UK National Population Collection is an example of
exemplary practice in genetic research, rather than another
Alder Hey and an embarrassment to us all.
Jane Kaye,
St. Catherine’s College,
Manor Road,
Oxford OX1 3UJ
Email: jane.kaye@law.ox.ac.uk
1. Ferriman, A. "House of Lords supports fir
Competing interests: No competing interests