Why our genes matter

In 2002 The Body Shop, the cosmetics retailer, began selling genetic testing kits in several of its stores in the UK. Priced at £120 (€172), the kits claimed to offer diet and lifestyle advice based on the analysis of nine human genes. After less than six months, the kits were withdrawn, following an outcry among scientists, shoppers and data privacy watchdogs.

Sciona, the maker of the test kits, was accused of exaggerating the strength of the link between health and genetic patterns. Privacy concerns focused in particular on fears over what would happen to the test results once Sciona had them.

Even now, says Helen Wallace of monitoring group Genewatch, patients are wary of genetic tests. "People who have a test today have no way of knowing how the results might be used one day in the future," she says. "In the US we have seen employers discriminating against people because tests make them seem like an expensive health risk."

Social security systems make this less of a worry in the EU, she says, but companies could still be wary of possible pension costs if a worker was to retire early for health reasons.

The EU has no legislation specifically dealing with the protection of genetic test results, instead relying on the general 1995 data protection directive to safeguard health information. So fears persist that test results could end up in the hands of insurance companies, employers and even government authorities.

The Council of Europe, which polices the protection of human rights in Europe, tried in 1997 to introduce a convention on ‘human rights and biomedicine’, containing a clause banning "any form of discrimination against a person on grounds of his or her genetic heritage".

Of the EU member states, 13, including all those from eastern Europe, have so far signed the convention, but various of the older member states have refused to sign, for contrasting reasons. For Belgium and the UK, the convention goes too far by prohibiting the creation of human embryos for research. For Germany and Austria, it is too liberal, since it allows research on embryos left over from in vitro fertilization programmes.

More than half of EU member states have chosen instead to tackle the problem at a national level. In 1992 Belgium became the first country in the world to adopt legislation against the misuse of genetic test results, followed by France and the Netherlands. Germany and the UK are now debating the possibility of laws to replace their voluntary codes of conduct.

"In general the misuse of genetic test results is very exceptional," according to Herman Nys of the biomedical ethics and law department at the University of Leuven in Belgium.

"As always though, a law cannot prevent everything," he says. "In Belgium insurers cannot ask for genetic test results, but there is nothing to prevent them asking what someone’s parents died of - which amounts to very similar information."

In 2002 The Body Shop, the cosmetics retailer, began selling genetic testing kits in several of its stores in the UK. Priced at £120 (€172), the kits claimed to offer diet and lifestyle advice based on the analysis of nine human genes. After less than six months, the kits were withdrawn, following an outcry among scientists, shoppers and data privacy watchdogs.

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