Fwd: Parliament Faults Medical Research Council and DNA BioBank

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Parliament Faults Medical Research Council and DNA BioBank

press-release

 

The Institute of Science in Society

Science Society Sustainability

http://www.i-sis.org.uk

 

General Enquiries sam

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ISIS Director m.w.ho

===================================================

 

Parliament Faults Medical Research Council and DNA BioBank

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" Capricious funding decisions " , " a politically driven project " . Dr. Mae-Wan Ho

reports.

 

Complete sources and references for this article are posted on ISIS Members’

website (http://www.i-sis.org.uk/full/ParliamentaryReportFull.php). Membership

details here (http://www.i-sis.org.uk/membership.php).

 

The Medical Research Council (MRC), which dispenses public funds for biomedical

research, has been promoting ‘health genomics’ at great expense, after hundreds

of millions have been squandered on the human genome project that has yielded

little more than start-up companies for the biotech industry. Worse still, it

intends to set up a large human DNA ‘BioBank’ as follow-on from the human genome

sequence that has now been mapped and sequenced.

 

The BioBank project aims to accumulate DNA samples from 500 000 UK citizens in

the first instance, to be stored along with personal data and health records. It

promises to ‘revolutionising’ healthcare by identifying gene variants that make

individuals susceptible to major diseases such as Alzheimer’s, diabetes, cancer,

and heart disease. New drugs and therapy will be discovered, that will be

customised to the individual’s genetic makeup, so it is claimed. All of which is

hype bordering on nonsense.

 

Right from the start, the BioBank has been widely criticised by public interest

organisations for the potential misuse of the database that could result in

genetic discrimination against those carrying putative ‘disease-genes’, and for

the erosion of privacy.

 

More than that, we have pointed out that the project was simply misguided by

genetic determinist ideology, and consequently, the database would prove largely

useless and would only serve to fuel the resurgence of eugenics.

 

We have been complaining about the MRC and its BioBank for the past three years,

it seems, to no avail. (See past issues of Science in Society, in particular,

13/14 and ISIS News 9/10.)

 

On March 25, however, the highly influential House of Commons Selective

Committee on Science and Technology (SCST) finally released a strongly worded

report that bears out most of our criticisms.

 

The SCST report points out that " there is significant disquiet about the

policies and performance of the MRC " ; and that the perceived shortcomings have

" harmed the reputation of the organisation and caused great resentment among

….the research community " . The MRC has had a good track record in the past, but

has " gone to pieces " in the last few years.

 

The MRC stands accused of " making capricious funding decisions " , of

" inconsistent and inadequate communication " , and spending too much on big

projects, leaving little for individual researchers in universities.

 

" A lot of researchers are feeling awfully fed up, " said Ian Gibson, Chair of the

SCST as well as the Parliamentary and Scientific Committee (see Box).

 

Ian Gibson challenges the scientific establishment

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Ian Gibson has a doctorate in biochemistry and was a successful researcher and

academic before he became a Member of Parliament, without doubt, one of the most

scientifically literate Member of Parliament.

 

He appears to be increasingly taking on the scientific establishment after

having instigated an enquiry into government funding of learned societies last

year. That report, released August 2002, has made quite a dent in the

self-satisfied smugness of the Royal Society.

 

For example, the Royal Society was urged to be more ‘family friendly’, to

reassess its selection procedures to identify " possible obstacles to the success

of female applicants " and to be more representative of the entire scientific

community in its research funding. The Royal Society’s Committee for Public

Understanding of Science (Copus), in particular, was damned as " revealing of a

gulf in perception [between the Royal Society and outsiders] " .

 

Most of all, the Royal Society’s " confidence in its all-round expertise may be

misplaced, " the report said, and urges the Royal Society " to consider carefully

when producing policy and advice whether it really has adequate in-house

expertise in all fields of scientific knowledge, and to consult other learned

societies as a matter of course. "

 

At a recent " DNA 50 years " side-event, part of the commemoration of the 50th

anniversary since the publication of Watson and Crick’s famous article on the

DNA double-helix, Ian Gibson gave an erudite, yet deceptively spirited and

off-hand account of the many scientists besides Watson and Crick who should be

given credit, starting with Rosalind Franklin whose stolen data was crucial to

the Nobel Prize awarded to her male colleagues. The talk was liberally sprinkled

with side-swipes at the class solidarity within the scientific establishment,

and remarks on DNA being " boring " and " over-hyped " . He even mentioned one of my

heroes in the Edinburgh University Genetics Department, C.H. Waddington,

prominent critic of genetic determinism in the 1950s right up to his death in

1976.

 

 

The MRC is to spend US $700 million this year, ranking second only to the $ 900

million from the Wellcome Trust, a charity that has long been criticised for

being too friendly to the pharmaceutical industry. Over half of the MRC money

goes to its 39 research facilities spread across UK; much of the rest go to

peer-reviewed grants, fellowships, graduate school stipends and special projects

such as BioBank. The BioBank costs the MRC $70 million, and also receives

support from the Department of Health and the Wellcome Trust.

 

The BioBank is a " politically driven project " , says the report, and the MRC is

faulted for " inadequately consulting the research community " over plans for it.

 

Needless to say, the MRC did not really consult the public either. It carried

out a highly selective and limited consultation exercise that excluded public

groups known to be critical of the project. Nevertheless, those consulted raised

numerous objections and questions that remained unanswered to this day. The

promised public consultation scheduled for the beginning of 2002 simply vanished

into thin air.

 

MRC chief executive George Radda was reported to be " surprised and disappointed "

by the SCST report, which he says is " full of error, misunderstanding, and

misuse of information. " He is preparing a full reply jointly with the Department

of Trade and Industry and the Department of Health.

 

Radda has better justify the huge spending on BioBank and health-genomics

related research. The UK is not the only government caught in this financial

blackhole. An article in the April issue of Nature biotechnology by Berkeley

geneticist David Rasnick, who has set up a biotech company, exposes the lack of

success in the sector, both scientifically and financially. He predicts that

" the entire healthcare industry in the United States is set for a major fall and

biotechnology will likely lead the way " . Governments of Singapore, Malaysia and

other countries have better take heed.

 

Sir Alex Jeffreys, father of forensic genetics, who has earlier proposed to

extend the DNA BioBank project to include the entire population of Britain, is

now reported to be unconvinced that a large scale longitudinal study such as the

BioBank will yield more insights than traditional case control studies. BioBank

has the " potential to consume very large amounts of money " , he says, and a cost

benefit analysis is needed.

 

He should also take into account the much more serious waste of scientific

talent and imagination in condemning generations of scientists to the routine,

mind-numbing work involved in the project.

 

Not to mention, further, the phenomenal amounts of time and effort that

countless doctors, nurses, technicians, clerks, etc. will have to devote to

collecting and storing samples, keeping records, to quality control and to

ensuring that the data collected are kept confidential; time and effort that

will be taken away from the care of patients.

 

Health genomics and the BioBank indeed constitute a big white elephant that will

bankrupt the National Health Service in more ways than one.

 

See chapter in forthcoming book:

 

Ho MW. The bioinformatics and health genomics bubble. In Living with the Fluid

Genome, ISIS and TWN, London and Penang, 2003.

http://www.i-sis.org.uk/fluidGenome.php

 

Complete sources and references for this article are posted on ISIS Members’

website (http://www.i-sis.org.uk/full/ParliamentaryReportFull.php). Membership

details here (http://www.i-sis.org.uk/membership.php).

 

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This article can be found on the I-SIS website at

http://www.i-sis.org.uk/ParliamentaryReport.php

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General Enquiries sam

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ISIS Director m.w.ho

 

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