Emotional Blackmail

How disabled people ended up campaigning for a predatory drugs firm

By George Monbiot. Published in The Guardian, 7th May 1998.

Next week, the European Commission’s “Directive on the Legal Protection of Biotechnological Inventions” will receive its second reading in the European Parliament. It’s an extraordinary measure, which will enable biotechnology companies to acquire exclusive rights to the very stuff of which we are made. They will be allowed to seek patents on all the genes in the human body, on the DNA of animals and plants, even on whole human body parts. According to doctors and medical researchers, the directive will stifle research and multiply the costs of treatment. It will place within the hands of the lucky corporations who acquire it a monopoly on our humanity.

No one expected this barmy bill to get so far. In March 1995, MEPs defied the European Commission for the first time in history by rejecting it. The corporations’ extraordinary ruse seemed to have failed, and hospitals and surgeries all over Europe shuddered with relief. But then the biotech companies acquired an unlikely new ally.

Until mid-1995, the Genetic Interest Group (GIG), which represents the victims of genetic disorders, had publicly opposed attempts to patent genes. Alastair Kent, its director, 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 argued, reduce collaboration between scientists and increase costs for charities fighting genetic diseases too rare to be commercially interesting.

But as the European Commission, coaxed by an industry with which it enjoys a curiously friendly relationship, prepared to resubmit a scarcely-altered directive to parliament, GIG executed a remarkable piruoette. In March 1997, Alastair Kent’s name appeared on a pamphlet called “Patents for Life”. “MEPs”, it instructed, “must … vote to pass the gene patenting directive into law as soon as possible. Or else you will have to 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.” Like the corporations, the pamphlet argued that companies wouldn’t invest in genetic research unless the profits accrued to them.

When MEPs came to vote on the new directive in July last year, they were, despite the best efforts of a reborn Alastair Kent and the biggest corporate PR campaign ever waged in the European Parliament, inclined to reject it, not least because doctors were pointing out that institutions would not invest in therapies involving genes possessed by other companies, while bodies such as the NHS would face a mountain of licence fees, administrative and legal costs. Indeed, health centres were already being told that bits of their patients belonged to corporations. The Manchester Regional Genetics Centre, for example, had received demands for royalty fees, payable whenever it tested for the cystic fibrosis gene.

But when MEPs arrived on the steps of parliament, they were confronted by a sight which would have struck terror into the heart of any delegate: a dozen wheelchair-bound people, organised by Alastair Kent, were noisily protesting that they were about to be denied the chance of a cure. The MEPs panicked and approved the Commission’s directive.

Only afterwards did MEPs discover that, since mid-1995, GIG had been receiving expenses and “gifts in kind” from SmithKline Beecham (SB), one of the world’s most aggressive genetic patent seekers. Though there is no suggestion that he himself made any financial gain, Alastair Kent’s Strasbourg expenses were covered by SB.

Alastair Kent and the disabled people he had marshalled were acting, moreover, without a mandate from the whole organisation, some of whose members now complain that “our names were taken in vain … GIG in the UK has always been against the idea of exclusive patenting of a gene or gene sequence “. Unrepresentative, unsanctioned, Kent’s stooges handed to the company which funded GIG the means to secure a substantial proportion of life on earth.

Next week, disabled people funded by corporations will be tugging once more upon the heartstrings of our MEPs, as they make the final decision about whether to allow a handful of companies to claim us as their own. It’s the last chance they’ll have to resist these monstrous demands, and show that emotional blackmail doesn’t pay.