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Page last update: 25/12/2008

Genes, Medical care: EU regulations against genetic discrimination needed

Regulation is needed to keep genetic testing – which can act as an early warning system against certain diseases – in the medical domain and prevent its use as an instrument of social and economic discrimination, experts have warned.

Genes, our biological blueprint, ensure that our bodies develop and function properly. However, imperfections in our genetic make up can sometimes lead to disease. As we slowly unlock the secrets of these hereditary markers, we are increasing our ability to detect genetic disorders when they occur and even predict dispositions for certain diseases.

"For the first time in history, humanity holds the 'book of life' in its hands," Research Commissioner Philippe Busquin told delegates at a recent conference in Brussels - organised by the Commission and Belgium's Socialist Mutual Health Fund - on 'New genetic applications and access to healthcare'.

Public health and social security officials, public and private insurers, European and national policy-makers and politicians, as well as academics and researchers attended the gathering in late March. The delegates discussed the potential positive aspects and drawbacks of genetic testing.

As a recent EU study illustrates, the health benefits of genetic testing are reflected in the growing number of these examinations carried out in Europe each year - with increase of as much as 100% annually in some Member States. More than 700 000 genetic tests, worth €500 million, are performed annually in the Union.

However, evidence suggests that some employers in the United States, and now in Europe, are using genetic testing to screen and select prospective employees. Insurers and banks are also considering the possibility of introducing genetic screening.

Solidarity not discrimination
Although genetic testing has its advantages, delegates cautioned against the danger of it being used as an instrument of economic and social discrimination. "Discoveries in genetics have opened the door to new notions of private life, new rights but also new exclusions," observed Gerritt Raus, director of the governance programme at Belgium's King Baudouin Foundation.

Delegates agreed overwhelmingly that regulation was needed at European and national levels to avoid the commercialisation of genetic testing and to keep the practice in the medical domain. They recommended that only certified specialists should be allowed to carry out genetic tests and the results must be kept confidential and not disclosed to insurers and employers.

To ensure a level playing field, insurers argued, patients should also not be given access to the results of genetic testing as that may give them an unfair advantage. They also maintained that genetic information is unlikely to be abused by the European insurance sector. "The public should not worry about the influence genetics will have on access to healthcare," said Claude Beraud from the France's National Mutuality Federation. "No [EU] 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."

"The fact that we are all susceptible to genetic diseases... is a strong factor for solidarity," added Alastair Kent, director of the Genetic Interest Group. Some participants pointed out that genetics is still largely a science of the future. This means that R&D activities need to be carried out in a balanced ethical and judicial framework. It also means that our ability to use genetic testing as a predictive tool should not be over-exaggerated.

"Knowledge of your genetic make-up does not always have an effect on how you die," Mr Kent explained. An individual's health depends equally on numerous environmental factors. In May, the European Commission is organising another conference on the social, ethical and legal implications of genetic testing.

Source: EU and external sources
More Information:
Busquin speech (in French only)
'New genetic applications and access to healthcare' conference programme [PDF document – 25,6 Kb]
Belgium’s Socialist Mutual Health Fund
'Human genetic testing: what implications?' conference

Last update: 25 December 2008 | Top