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Biobank UK:
Is mental health a genetic problem?
January 20,
2002
Dr Helen
Wallace of GeneWatch UK has concerns about a government-backed project
to 'map out' genes said to be a key factor in the aetiology of mental
health problems. She explains why
.....
What is Biobank
UK?
"Biobank
UK" is a ground-breaking £60 million-plus genetic research
project proposed by the Department of Health, the Medical Research
Council and the Wellcome Trust. Half a million people will be asked
to give blood samples and fill out lifestyle and medical questionnaires
to investigate the links between genes, environment and disease.
Heart disease and cancers are top of the list to be investigated,
but psychiatric illnesses and behaviour are also likely to be studied.
What are the implications of Biobank UK for human rights, health
policy and the way we view and tackle illness and behaviour?
Key concerns
about the project
Biobank research
has the potential to increase understanding of the mechanisms underlying
major diseases and hence lead to new genetic tests and treatments.
However, the research likely to be undertaken using Biobank UK raises
many issues and concerns, including:
· the
potential for genetic discrimination against those identified as
susceptible to future illness by genetic testing;
· the role of commercial companies in driving the direction
of research;
· the potential for gene patenting and licensing to restrict
access to new treatments;
· issues of confidentiality and consent;
· a danger that poorly designed research will identify spurious
links between genes and illness or behaviour.
Many of these
concerns are likely to be exacerbated by any research into behaviour,
sexuality or intelligence using the genetic and lifestyle data in
the biobank.
GeneWatch UK
has just published a report "Giving your genes to Biobank UK:
Questions to ask", which highlights the lack of public safeguards
in these areas. We argue that there is an urgent need for legislation
and new democratic processes to prevent genetic discrimination,
control commercial interests, clarify who gets access to the data,
and give the public a say in what research gets done with their
own genetic information.
The biobank
should be shelved until these safeguards are in place. Biobank UK
also requires an independent scientific review to ensure NHS resources
are not wasted on a poorly-designed project with limited potential
to bring the promised benefits to health.
Although many
small biobanks already exist in the UK (a database of some of them
is included on the GeneWatch website), Biobank UK involves far greater
resources and Government commitment.
The idea of
expanding it to include samples and genetic information linked to
the medical records of almost the entire UK population has already
been floated by some Government advisors. It is therefore particularly
critical that the necessary safeguards are in place and concerns
addressed before the project goes ahead.
Biobanks
and mental health
Using existing
UK biobanks, research is already being undertaken into the role
of genes in anxiety, depression, childhood hyperactivity and inattention
and behaviour and language problems in twins.
Illnesses such
as Parkinson's disease, Alzheimer's and schizophrenia have also
received much attention from geneticists, often leading to dubious
headlines announcing the discovery of a gene "for" the
condition, as if it had a sole genetic cause. The poor predictive
nature of many genetic tests is rarely emphasised, nor the difficulties
in replicating many of the studies.
Perhaps not
surprisingly, the scientific evidence from such studies is extremely
weak. Claims for genes linked to schizophrenia, manic depression,
homosexuality and alcoholism have all eventually been withdrawn.
The importance of these results lies in indicating how little genes
influence behaviour. Even in those rare examples where there is
a strong link between a neurological disorder and a single gene,
such as Huntingdon's chorea, the single gene mutation still leads
to variable phenotypes. Environmental factors contribute enormously
to development of this disorder. Since we cannot yet predict the
clinical course of even this single monogenic disease, the likelihood
of being able to predict mental illness or behavioural traits is
even smaller .
Biobank studies
- linking genetic and environmental information - may help elucidate
the developmental pathways of some diseases, but only if they are
properly designed and focused. Although funding has been earmarked,
and sample collection is scheduled to begin at the end of 2002,
Biobank UK has yet to develop any protocols or even hypotheses for
its studies. There is a real danger that resources will be wasted
on a "grand project" that returns little in terms of scientific
understanding, and does not benefit those suffering from mental
illness.
New genetic
tests, however, will almost certainly result from the research,
and with them claims to be able to identify individual susceptibility
to a range of illnesses and behaviour. Genetic tests are poorly
regulated. Some are already being marketed through the internet
and thus available without quality controls or counselling. Others
are subject to acrimonious disputes around patent rights and costs,
restricting access to those who might benefit from their aid in
diagnosis. There are no laws in the UK to prevent employers or insurers
from using genetic tests to decide who gets a job or an insurance
policy. Widespread genetic discrimination could result - also raising
the potential for eugenics and even "designer babies"
in attempts eliminate the "wrong genes" - or include the
"right" ones - before birth.
The rules are
not yet set for how commercial companies and other researchers will
interact with Biobank UK. However, little attention has been paid
to how the commercial strategies of companies could drive the research,
perhaps against the public interest. Might new genetic tests and
treatments be targeted at the "healthy ill", supposedly
to treat susceptibility to future mental illness or prevent criminality
or enhance intelligence? Will companies patent the donated human
genes, restricting the exchange of scientific information, driving
up the costs of any new treatments that are developed, and limiting
access to potential benefits? Will the police or courts get access
to the data, and if so, how will it be used?
These are key
questions for the public, patients, policy-makers and the medical
profession. Psychiatrists, nurses, carers and those suffering from
mental illness have a central role to play in the debate, given
the controversies surrounding research into mental illness and behaviour,
and the potential for existing discrimination and exclusion to be
exacerbated.
More information
and ideas for action are available on the GeneWatch UK website at
www.genewatch.org
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