Embryo screening needs tight controls

Luc Recordon is in favour of lifting the ban on embryo screening Keystone

A parliamentarian and supporter of embryo screening for genetic diseases tells swissinfo that clear limits need to be set before the law can be changed.

Luc Recordon, who is himself disabled, welcomed this week’s vote in the Senate which calls on the government to allow such screening under strict conditions.

The House of Representatives, the country’s other parliamentary chamber, has already voted in favour of allowing genetic screening – also known as pre-implantation genetic diagnosis.

During an emotional speech to the House in June, Recordon appealed to parliamentarians to lift the ban “in the name of children who, like me, would have preferred… never to have been born than to be born with severe disabilities”.

Campaigners against a change to the law argue that embryo screening – already permitted in some other European countries – would lead to so-called “designer babies”, selected for their sex or other characteristics.

They have threatened to force a referendum if the government tries to push new legislation through parliament.

swissinfo: You must be pleased that the Senate has followed the House of Representatives in calling for the ban on embryo screening to be lifted…

Luc Recordon: Yes, especially because I thought it would be a very tight vote. I think there has been a change of attitudes.

But it’s also good that there is strong opposition, because this means we won’t be able to rush into making a law which goes too far. I wouldn’t want to have legislation like you find in Britain, for example, where it’s even possible to choose children according to the colour of their hair. I don’t think we should go that far. We need to set clear limits.

swissinfo: But opponents argue that setting limits will not stop the threat of designer babies.

L.R.: We have to define a list of diseases for which this type of screening would be useful. Probably in parliament it will be difficult to reach agreement about which diseases should be on the list.

Take diabetes, for example. On one level it’s a very common and treatable disease. But it can also bring great suffering and maybe it’s right to let parents decide whether they are able to assume the responsibility of bringing up a child with diabetes. But I should say that these are very much open questions and I haven’t yet come to any conclusions.

swissinfo: You have said in the past that you don’t want to make your own disability a political issue. Why did you speak out about it during the parliamentary debate?

L.R.: You’re right that I don’t like to make an issue out of it. But when it came to this particular debate I saw how many of my fellow parliamentarians just did not understand the real suffering that comes with some diseases and disabilities. They seemed to be talking on an exclusively intellectual level. I wanted to correct this and speak about the lives of many people.

I also spoke out because I am somebody who is fortunate enough to be very happy in my unhappiness. But I don’t want people to look at me and think that I am a typical success story, that I am an example of how people can overcome disability and succeed in life. I am more the exception to the rule.

swissinfo: Groups which represent the interests of the disabled would argue that screening for diseases is a form of discrimination and that people should not be denied the chance to make the best of their lives…

L.R.: We talk about giving people a chance, but what sort of chance do we mean? The truth is that it is very rare that someone with a major disability can be as fortunate as me.

Over the years I have spent long periods of time in hospital… and met children with diseases which are much worse and harder to understand than mine. I remember once in Germany I saw a three-year-old child with no legs and no arms, and I looked into his eyes and saw that he was suffering terribly. At that moment I thought I understood his despair because it was something I also felt when I was eight or nine.

Yes, I’ve been lucky. And yes, I can bring hope to people. But many others will never be as lucky as me.

swissinfo: What about the risk that parents may come under pressure not to have a child if a genetic disease is revealed at the time of embryo screening?

L.R.: I can’t deny that this risk does exist. But it would be totally unacceptable for anybody to criticise the parents for keeping their child. That is their decision and responsibility and nobody has any right to blame them.

But there’s another problem and a real danger. If we reduce the number of people born with a disability we will need to fight even more for disabled rights.

If disabled people become a smaller and smaller minority, they will not have a powerful voice and it will be up to us – the politicians – to do all we can to ensure their dignity and integration in society.

There are many questions still to be answered, but that does not mean we should stop working as much as we can to reduce disabilities.

swissinfo-interview: Ramsey Zarifeh

In brief

In June the House of Representatives voted in favour of lifting a ban on screening embryos for genetic diseases.

The Senate followed suit on Tuesday. The proposal now goes to the government, which will have to draw up new legislation to be submitted to both parliamentary chambers.

Further debate in parliament is not expected before 2007.

Key facts

Luc Recordon is a Green Party parliamentarian from canton Vaud.
He was born with a severe disease of the limbs which was later diagnosed as Holt-Oram Syndrome.
He is a lawyer by trade and serves on the board of directors of Vaud Cantonal Bank.