The notion of "patenting life" is not new. It has been on the world agenda for 10 years but, while the US could not resist its commercial potential and raced down the genetic patenting path, Europe dithered. All indications are that the Council of Ministers will today say yes to gene patenting, which will mean companies in effect having proprietary control of parts of the human genetic map.
Having that power is cause for dismay among many patient groups making up the Irish Inherited Disorders Organisation, not to mention the organisation itself and most equivalent bodies within the EU. Many medical geneticists also have concerns.
It is felt that patenting gene sequences is not good for patients or their families. It is of immense commercial value because it could be applied to tests for inherited diseases. It is likely to be further developed to devise cures for rare diseases and cancers. A company with a patented test - say for the genes for familial breast cancer - would have massive money-earning potential.
The Huntington's Disease Association of Ireland's development officer, Ms Bernie Moran, who is also on the disorders organisation board, fears the directive would "give pharmaceutical companies a woeful hold" on genetic research and its applications.
"We're not against patenting but against patenting human genes, but with industry so behind it, it will be very hard to resist it."
An orchestrated campaign was deployed to persuade MEPs to back the directive in the European Parliament, she says, while support organisations, usually preoccupied with spending on patients rather than policy, were caught off-guard. Green Party MEP Ms Nuala Ahern says patient groups were misled, not consulted sufficiently and their views misrepresented before the vote.
"If agreed by council, gene sequences isolated from the body will become patentable commodities against the wishes of patients, doctors and researchers." Genetic laboratories would be decimated, testing for diseases like muscular dystrophy or cystic fibrosis would become much more expensive.
Prof David McConnell of Trinity College's department of genetics says patient group concerns are largely unfounded although the directive is not perfect.
The EU has looked unprofessional by failing to provide legal protection of biotechnological inventions, he says. Pharmaceutical companies were investing in biotechnology, but mostly in the US. Patenting, he feels, accelerates research and grants fair reward. "The patenting system itself is the best means of protection for patient groups. It encourages inventors to invent and companies to make products for the marketplace."
While there was nothing inventive about gene sequencing, a pro duct/process coming from inventiveness should be entitled to a pa tent. He understood the directive would make this distinction.
Dr Gareth Evans, a British consultant in medical genetics and cancer epidemiology, says biotech companies would be able to "cherry-pick the profitable, high-throughput genetic diseases", and a comprehensive service for those with rarer diseases would be severely compromised.
It is a view endorsed by Prof Andrew Green of University College Dublin, director of the National Centre for Medical Genetics in Dublin. Like the disorders organisation, he draws the line at patenting gene sequences. He says people with genetic diseases would face greater costs in diagnosing and managing their illnesses.