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Diagnosis


Genetic testing on embryos faces ballot box test




Does genetic embryo testing offer more certainty for babies and mothers or is it opening the doors for a inhumane selection procedure (Keystone)

Does genetic embryo testing offer more certainty for babies and mothers or is it opening the doors for a inhumane selection procedure

(Keystone)

The question of whether Switzerland should allow the testing of embryos conceived in vitro (IVF) for genetic defects and serious illnesses will be put to a nationwide vote on June 14.

But the result of the ballot – a constitutional amendment – is set to be challenged to a second vote at a later stage. A group led by members of a small centrist party pledged to collect signatures to bring down a law already prepared by parliament to implement the constitutional reform.

A practice which is already common in several neighbouring countries, pre-implantation genetic diagnosis (PGD) is the genetic analysis of embryos conceived in vitro before they are implanted into the mother’s uterus.

Article 119 of the Swiss constitution already covers medically assisted reproduction and genetic engineering but makes no mention of PGD. Nor is it mentioned in the proposed amendment of that article on which the Swiss will vote in June.

The proposed amendment may be a minor modification to the text, but it could have major consequences.

Currently the constitution allows for the creation in vitro of only the number of embryos “that can be immediately implanted”, which in practice is three. If the amendment is passed, it will be possible to create as many “as necessary for medically assisted reproduction”, which could be up to 12 embryos.

Extended scope

However, following extensive debate on the issue, the parliament has already effectively extended the scope of the law as it would be applied should the amendment pass the ballot box test.

Aside from the creation of 12 embryos per treatment cycle, the law would authorise testing the embryos for incurable diseases and genetic anomalies such as Down syndrome.

It would also, with a view to the risks associated with multiple births, allow the freezing of embryos so that just one could be implanted at a time and the others saved for future attempts.

The parliament declined however, to authorise the creation of embryos to harvest stem cells for the sole purpose of providing medical treatment to a sibling.

While the law could seem restrictive compared to those of other western countries, it remains too liberal in the eyes of many Swiss.

The small centrist Protestant Party – its grassroots traditionally being members of the Protestant and Evangelical Free churches - has already announced its intention to attack the law via referendum, and to force a second vote.

The party can realistically count on support from all corners, with responses to such emotive issues usually driven by personal convictions rather than political alliances.

Baby selection

Marco Romano, a parliamentarian for the centre Christian Democrats, says allowing PGD could open the door to any manner of as yet undiscovered technological procedures being carried out on human embryos.

Disabled divided

Arguably those for whom the issue of preimplantation genetic diagnosis (PGD) is most relevant, the various Swiss associations for the disabled are divided on the issue.

Those who support allowing the procedure include the umbrella organisation Integration Handicap which applauds a reform that “gives couples who carry serious hereditary diseases the possibility to not pass the disease on to their children”, says the organisation’s equality manager Caroline Hess Klein.

In opposition, a coalition of 17 organisations is calling for a No vote on June 14. Secretary of the Agile group, Magali Corpataux says authorising PGD will mean parents run the risk “of reproaching themselves for having the choice and not making the choice that is considered right”.

However both groups oppose the law already voted by parliament which they argue goes too far. “There is a fear that, through this, it will be society that decides which life is worth living or not,” says Hess Klein.

Romano, who was “tentatively in favour” of PGD early in the debate, says his position is “absolutely not dictated by religion”, but he changed his mind after having visited a reproductive medicine clinic in Lugano.

“There I saw the film I did not want to see,” he says.

“I spoke at length with a professor and I had the impression that the specialists want to use anything that technology makes possible, to the point of playing with life, reducing it to a point that is almost banal,” Romano adds.

“In the United States, 10% of testing is used to determine the sex of the child. In Switzerland, the parliamentary debate very clearly showed the willingness of some people to go even further. In accepting PGD, we open a door and we don’t know exactly where it will take us.”

But Romano is in favour of allowing prenatal diagnostic testing on foetuses in the uterus, which is allowed in Switzerland and can lead some parents to a decision to abort the pregnancy, possible up to 12 weeks.

“Sometimes it is necessary. But with PGD we are going a step further. It becomes a selection, the tendency to want a made-to-measure baby. For me, it’s the moment to say stop. I don’t want to allow the possibility of greater selection,” he says.

Creating certainty

Supporters of PGD argue that allowing the procedure will add a layer of certainty for would-be parents.

“We have to clearly communicate what this will allow for couples, instead of starting to enter into all the fantasies about medically assisted reproduction,” says Liliane Maury Pasquier, senator for the leftwing Social Democrats.

A trained midwife and member of the commission that examined the parliamentary project, Maury Pasquier says the “obstacle course” that couples navigate before turning to in vitro fertilisation – often years of unsuccessful attempts to conceive, the shock of being diagnosed as infertile and/or with a serious transmissible disease - is “painful and humanly difficult”.

“When a couple starts in vitro fertilisation, there is already quite a history that has preceded it,” she says.

“And finally, they find themselves with an embryo that is ready to be implanted and if PGD is not done [many couples will have this procedure in neighbouring countries, ndlr], we have the beginnings of a pregnancy, in which a woman has placed all her hopes … or not at all, because she is scared of what a PGD could have revealed. And so it adds even more weeks of uncertainty.”

Maury Pasquier argues allowing PGD will provide mothers and the potential children with “more security” and help to “avoid adding suffering to suffering”.

Technology and personal choice

Romano does not deny that Switzerland – like all the older countries – needs more children. However he argues that a baby is “a gift, surely the most beautiful that we can receive, but it is not a right.

“We cannot legislate it. But today, we have a tendency to see rights for everyone. And when I see what happens in other countries and the possibilities that technology offers, it scares me.”

Maury Pasquier argues that the choice of whether to bring a child into the world, or to have a handicapped child, must remain “eminently personal”.

“At the moment of prenatal diagnostic testing (on a foetus), we leave the choice up to the parents. So we should also leave it to them at the moment of a PGD,” she says.

“If we’re talking about human dignity, a 12-week-old foetus has potentially more than a five-day-old embryo,” Maury Pasquier adds.


Translated from French by Sophie Douez, swissinfo.ch



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