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
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
Source: EU and external
speech (in French only)
genetic applications and access to healthcare' conference
– 25,6 Kb]
Socialist Mutual Health Fund
genetic testing: what implications?' conference