Gene therapy funding a
'drop in the ocean'
Experts worry what impact the Government's
White Paper on genetics can have if it's not matched with money.
Katrina Lythgoe reports
When it unveiled its White Paper on genetics, the Government said
that the NHS should use the new knowledge to the benefit of all
patients, and that Britain should lead the world in genetics research
and development. Today, we reveal the verdict of the genetics
community: the paper marks a step in the right direction but they
will need more money if it's to have an impact.Ê
This snapshot of their opinion has come from an exclusive poll
commissioned by The Daily Telegraph, conducted with the help of
Government adviser Prof John Burn and the British Society for
Human Genetics . From a diverse range of fields and laboratories,
73 experts gave us their opinion on the extra £50 million the
Government will spend. Nine out of every 10 polled had reservations
about whether the additional investment would allow Britain to
keep up with the rest of the world in the area of gene therapy.
A quarter categorically said that we would fall behind.
The Government has said that it will invest an additional £3 million
in gene therapy for the 4,000 single-gene disorders, and a further
£2.5 million for cystic fibrosis, the most common of them. It
has also allocated £4 million to pay for the vectors - viruses
and other means to carry healthy genes into patients' bodies -
that make gene therapy possible.
These amounts may sound like a fortune to the parents of a child
suffering from a genetic disorder, but genetics research is not
cheap. This amount of funding is a "drop in the ocean", as one
expert put it. "Peanuts compared to charity work recently funded,"
said another senior geneticist. "This will make no difference."
To put these figures in perspective, consider the cost of gene
therapy trials for the "bubble babies" who have X-linked severe
combined immunodeficiency, X-SCID, which strips the body of the
ability to fight infection.
Developing gene therapy to fight this disease cost Great Ormond
Street children's hospital £1 million, and it costs £100,000 to
treat a single child. The hospital will receive some extra funding
from the Government but will still rely heavily on charities.
"Amounts like £3 million for gene therapy and £2.5 million for
cystic fibrosis are almost insignificant on a national level,"
said Dr Stephen Hart, a molecular immunologist at the Institute
of Child Health.
Not everyone agrees. Many experts questioned whether more money
should be put into gene therapy at all. "In terms of progress
towards treating genetic disease," said one, "I don't believe
gene therapy is the most cost-effective area to target resources."
Although gene therapy has been a fashionable topic for a decade,
success has been limited. The Great Ormond Street team is one
of only three worldwide to have reported unambiguous positive
results, and there are concerns about side effects.
"I am sceptical about gene therapy as research has been ongoing
for many years with very little success," said one molecular geneticist.
"I am concerned that the hopes of families with single-gene disorders,
such as cystic fibrosis, are raised with the increased publicity
of a 'cure'."
The second controversial issue concerns the NHS's ability to diagnose
those who have faulty genes. As Professor John Burn, director
of the Northern Genetics Knowledge Park, mentions in his accompanying
article, the Government has set impressive targets for the testing
of genetic disease. But more than eight out of 10 of our experts
said they had reservations that the targets could be met.
"The target for identifying unknown mutations in genes seems unrealistic,"
said one. "This paper will fuel unrealistic patient expectation
with no prospect of delivery by an already overstretched laboratory
workforce," another senior geneticist added.
And therein lies the problem. You can pump all the money you like
into new buildings and new equipment, but if there are not enough
people processing the tests they will not be able to cope. The
Government has allocated money to train 90 new laboratory scientists
in recognition of this. What many of our experts wonder, however,
is who will train them?
"There is an acute problem with shortages of trained staff, to
the point that there is limited capacity for existing staff to
train new individuals even if the promised funding becomes available,"
said one.
A consultant clinical geneticist added: "The real problem is in
staff retention in the labs and that can only be addressed by
improving pay." The trouble is, improving pay for laboratory technicians
is not going to do much to improve the Government's profile.
Despite their reservations, most experts welcomed the White Paper
- if only because it will put genetics in the spotlight, giving
hope for better funding in the future. "Clearly it demonstrates
a raised profile for genetics, at least until the next hot topic
comes along," one geneticist replied.
"The UK is ahead of the United States and the rest of the world
in many areas of genetic science and its clinical application,"
said Prof David Porteous, head of medical genetics at the University
of Edinburgh.
"This is despite relatively low investment in basic science and
a dreadful record on biotech investment. The Government investment
is fully justified, but only sufficient to make modest changes
in UK effectiveness. We could be global leaders. We have the knowledge
base and we have the NHS, an unrivalled combination."
These words are at odds with the Government's gung-ho pronouncements:
"Britain's academic and industrial research prowess means that
we are already among the leading players in genetics research
and development," writes John Reid, the Health Secretary, in his
forward to the White Paper. "We are determined to harness that
potential and ensure the benefits of genetics are realised throughout
the NHS."
But one of our respondents, from the front line, remains gloomy:
"I hope the Government doesn't believe its own publicity material,
or we are in a worse mess than I thought."
23 July
2003

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