Brussels, 26 Mar 2004
At a conference on genetics in Brussels on 24 and 25 March, stakeholders called for increased vigilance against the risk of commercialisation of genetic testing. An appeal was also made for strict and appropriate legislation to be introduced at both national and European level.
Speakers at the conference, organised by the European Commission and the Socialist Mutual Health Fund of Belgium (UNMS), reminded participants, however, that developments in genetics are slow and that there will be no impact on our lives in the immediate future.
'Genetics is still a thing of the future,' said Dr Jean-Michel Vidal, director of clinical projects at Galileo Genomics. 'Reality lies in research in an ethical-judicial framework.'
Gerritt Raus, director of the Governance Programme of the King Baudoin Foundation agreed with the need for a legal framework. 'Discoveries in genetics have opened the door to new notions of private life, new rights but also new exclusions,' he said. 'In a society that is constantly striving for perfection, enthusiasm for new ways of improving the quality of life could lead to eugenics excesses'.
The message from the conference was overwhelmingly that genetic testing constitutes an advance if people refrain from reducing human life and social relationships to their genetic dimension, particularly through any form of social discrimination.
Evidence has shown that genetic testing has already appeared in the workplace, both in Europe and in the US, to select prospective employees. There is the possibility that testing could also be introduced in the areas of life insurance and bank loans, with potentially discriminatory consequences.
To prevent this, it is important to legislate to keep genetic testing in the medical realm, agreed participants. Prescription of the test must be limited to specialised teams, and tests must be reliable and relevant so as to avoid fake 'positives' or fake 'negatives'. Data should be managed in a confidential manner, and in no circumstances should findings be disclosed to private health insurance companies.
Representatives from the insurance sector argued that the patient should not be told the results either. Indeed this would raise the question of the possible abuse of the insurance principle by patients aware of their genetic make-up, they said. A principal of equivalence must be instituted to prevent an imbalance, said Jürgen Fritze from the German Association of private insurances.
Alastair Kent, director of the Genetic Interest Group (GIG) agreed, saying an imbalanced contract would mean the collapse of the system, which would be of benefit to no one. He also argued, however, that claims regarding the power of genetics to predict the future have been greatly over-exaggerated.
'You have to remember that knowledge of your genetic make-up does not always have an effect on how you die,' he said. The health of an individual depends not only on his or her genetic predisposition, but equally on numerous environmental factors.
Mr Kent also argued that 'The fact that we are all susceptible to genetic diseases [...] is a strong factor for solidarity'.
Professor Claude Beraud from the French National Mutuality Federation was of the same opinion. 'The public should not worry about the influence genetics will have on access to healthcare. In Western Europe, no government will ever abandon the notion of solidarity and non-discrimination. They will never allow national healthcare systems to enter into a commercial logic of exclusion,' he said.
Rudy Demotte, the Belgian Minister for Social Affairs and Public Health, speaking on the first day of the conference, insisted that progress in genetics is very slow, and that it is in prevention that genetics becomes very important. He also pointed out that it is not in the interest of anyone to make genetic testing commercially available as this would create the risk of misinformation.
The European Commission is organising another conference on the social, ethical and legal implications of genetic testing, to take place on 6 and 7 May.