The Genetic Interest Group (GIG) 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 has a team of five staff. These include:
Alistair Kent, GIG's Director. Kent is also a member of the Progress Educational Trust Advisory Committee.
John Gillott, Policy Officer. Gillott is also on the staff of the online clinical genetics resource Genepool along with Juliet Tizzard of Progress Educational Trust .
GIG's Advisers include Professor Peter Lachmann .
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.
choose whether to have genetic tests: `our organisation exists to make sure that access to new
technologies is not restricted by parliament or by doctors'
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
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. (Emotional Blackmail)
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 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. 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