Genetic Alliance UK

Genetic Alliance UK was formed in 2010 as a result of a name change by the Genetic Interest Group (GIG). It is a London-based national alliance of organisations with a membership of over 120 charities which support families and individuals affected by genetic disorders. Its stated role is to promote awareness and understanding of such disorders. It is funded by, among others, GlaxoSmithKline, Merck, Novartis, Pfizer, Schering Plough, AstraZeneca, Genzyme Therapeutics, and GE Healthcare.

GIG's Director is Alistair Kent. Kent has also been a member of the Progress Educational Trust Advisory Committee. GIG's Policy Officer was for several years John Gillott, who was also on the staff of the online clinical genetics resource Genepool along with Juliet Tizzard of Progress Educational Trust.

GIG's Advisors have included Professor Peter Lachmann and he is listed as an advisory board member in the GIG Annual Review 2006-07.

According to social scientists Sue Weldon and Brian Wynne, 'A significant number of patient groups have formed pro-genetics alliances (in many cases sponsored by pharmaceutical companies) to set their own agenda and to debate with the health professionals on their own terms. The Genetics Interest Group (GIG) is a powerful lobby that writes in apocalyptic terms of how genetic disorders have "blighted the lives of countless families". New knowledge is portrayed as: "a light at the end of a long dark tunnel for the millions of people with.chronic ill health, severe disability [etc.] as a result of their genetic makeup".' (pdf file:Assessing Debate and Participative Technology Assessment (ADAPTA) January 2001)

GIG's perspective contrasts markedly with that of the disability movement which argues that the social and ethical aspects of the introduction and use of new genetic technologies is not being properly debated and monitored at an early enough stage by people whose lives could be affected by them.

In 1997 GIG became embroiled in controversy over its role in lobbying for the 'Directive on the Legal Protection of Biotechnological Inventions', commonly known as the 'Life Patent Directive', which would allow for the patenting of genes, cells, plants, animals, human body parts and genetically modified or cloned human embryos.

GIG had publicly opposed attempts to patent genes and its director had warned that 'there is something fundamentally unacceptable about any institution, corporation, or individual having ownership over part of a human being'. The patenting of genes would, he had argued, reduce collaboration between scientists and increase costs for charities fighting genetic diseases too rare to be commercially interesting.

But in March 1997, the name of GIG's Director appeared on a pamphlet called Patents for Life which instructed MEPs to vote to pass the gene patenting directive into law or else explain to families "how it was that you had the opportunity to create significant progress in the search for cures, but you chose not to take that step."

In July 1997 MEPs arriving to vote on the directive were confronted at the steps of the parliament by wheelchair-bound protesters organised by Alistair Kent who claimed they were about to be denied the chance of a cure if MEPs did not vote for the Life Patent Directive. The lobbying to which the proposed directive was subjected is widely regarded as having been decisive in the MEPs' approval of a directive which all surveys showed was opposed by a clear majority of Europeans and which two years earlier MEPs had vetoed.

After complaints from some patient interest groups about what had occurred, the Chair of GIG issued a letter restating the views of the group, which were clearly against gene patenting. So how did the director of an organisation with such a policy come to behave in such a contrary way?

The fact that for the previous two years GIG had been receiving expenses and 'gifts in kind' from SmithKline Beecham, who were lobbying aggressively for the directive, offers one possible explanation. SmithKline Beecham's support for Kent's lobbying included not only his Strasbourg expenses but the hiring of the lobby firm GPC Market Access (the firm's MD, Michael Craven, later started Lexington Communications). Market Access has been accused of a 'massive disinformation campaign', to which GIG's Alistair Kent was party, to promote biotech as saving lives, ending hunger.

What has received less attention is the role in GIG and in this affair of John Gillott, GIG's Policy Officer at the time. What, after all, was GIG's Policy Officer doing while GIG's Director was so openly working against GIG's policy?

One thing Gillott was busy doing was vehemently attacking those with whom he and GIG should have been allied in opposition to the Directive. 'The Directive has been vigorously opposed,' Gillott noted in an article at the time, 'by environmental campaigners who say it is an aspect of the 'race to commodify life' which amounts to 'biopiracy' '. Gillott dismisses such views as 'the rubbish peddled by the environmentalists.'

Gillott's article appeared in the magaine LM (formerly known as Living Marxism) of which Gillott was the science editor. Two years later Gillott appeared in the Channel Four TV series Against Nature which presented environmentalists as comparable to the Nazis and as responsible for the deprivation and death of millions in the Third World.

Gillott and Kent have both spoken at events organised by the Institute of Ideas, headed by LM's former co-publisher, and Gillott is also a regular contributor to the Spiked website which was the successor to LM. As a leading member of a political network known to be hostile to more or less all restrictions on business, science and technology, it seems unlikely that Gillott would have welcomed the defeat of a Directive opposed by those who are highly critical of aspects of biotechnology and of the behaviour of big business.

Lobbying

GIG states in its Annual Review 2007-07 that it was "a source of information for articles featured in The Guardian, The Times, The Telegraph, BBC News-online, The Daily Mail, The Mirror and The Scotsman."

Affiliations

GIG states in its Annual Review 2007-07:

We collaborate closely with the Science Media Centre, based at the Royal Institution in London, and have provided them with inputs on a wide range of topics including stem cell research, screening programmes, animals in research, hybrid embryos and many other topics.

Funding

• GlaxoSmithKline stated on their website that: 'We have supported this organisation since 2000. During 2006: We gave an unrestricted grant of £20,000 to help their activities. This commitment allows GIG to develop services and support for its members and to raise awareness of their needs and expectations for innovative and effective therapies and other forms of support. Our support represented 6 per cent of their income overall.'^[1]

• Association of British Insurers
• Association of the British Pharmaceutical Industry
• Cambridge Genetics Knowledge Park
• Department of Health (S64 Core Grant)
• Department of health (S64 Project Grant)
• Eurogentest
• European Federation of Biotechnology
• Friends Provident
• Garfield Weston Foundation
• GE Healthcare
• GlaxoSmithKline
• Golden Bottle Trust
• HSA Charitable Trust
• Jeans for Genes Appeal
• London IDEAS Genetic Knowledge Park
• Medical Research Council (MRC)
• NHS (Research & Development Fund)
• NOWGEN (The North West Genetics Knowledge Park)
• Oxford Genetic Knowledge Park
• Pfizer^[2]
• SAFE
• Scottish Office
• Swiss Re
• University of York
• Wellcome - Core Funds
• Wellcome Trust

Notes

1. ^ Patient organisations: Working with UK and European patient groups, GSK website, Accessed March 2007.
2. ^ GIG Sponsors Page Accessed March 2007.