Current legislation on preimplantation genetic diagnosis in Germany does not reflect the views of the general public

Jun 28 2004

Current legislation on preimplantation genetic diagnosis (PGD) in Germany is out of step with the attitudes of Germans and should be changed, researchers told a news briefing at the 20th annual meeting of the European Society of Human Reproduction and Embryology on Monday 28 June).

At present PGD is forbidden in Germany, but in one of the first large study of attitudes to PGD amongst the general population and infertile couples in Germany, the researchers found that the majority of Germans think the technique should be permitted.

Dr Ada Borkenhagen, a psychologist and researcher at Charité Berlin, together with colleagues at the Berlin Fertility Centre and the universities of Leipzig and Marburg, found that 97% of 200 infertile couples and 80% of 2,110 members of the general population thought that PGD should be a permitted procedure for detecting genetic diseases in embryos.

However, there was little difference between the proportion of the general population that was against the use of PGD for screening for sex selection and other, non-disease-related reasons (97%), and the proportion amongst the infertile couples (99%). This pattern was repeated for the issue of reproductive cloning, which remains an unacceptable procedure for both groups, with 83% of the general population and 90% of infertile couples against it. Only 7% of the general population and 1% of the infertile couples were in favour of legalising this procedure.

The study showed that the potential demand for PGD was higher among infertile couples than amongst the general population; 83% of infertile couples said they would want to use PGD if it was found that they needed it, compared to 57% of the general population.

Dr Borkenhagen told the meeting: “Our study demonstrates a demand for PGD in Germany. A large proportion of the general population, as well as infertile couples, think that it would be better to carry out PGD rather than prenatal diagnosis during pregnancy. This is because prenatal diagnosis carries a risk of miscarriage, and, in addition, if a problem is detected in the foetus, the woman is faced with the difficult decision of terminating the pregnancy or giving birth to a baby with a genetic disease such as cystic fibrosis or Down’s Syndrome.

“The vast majority of the infertile couples that we surveyed wanted a change in the present German Embryo Protection Law, and the legalisation of PGD when the application is related to detecting a genetic disease. As a result of the current prohibition of PGD, a certain amount of ‘PGD tourism’ is taking place, with infertile German couples going abroad to places such as Spain for PGD. In addition, the system of funding for infertility treatment in Germany has changed recently, and couples now have to pay more for IVF. This means they are more reluctant to undertake the risks involved in prenatal diagnosis, and it has created an even greater demand for PGD.”

The researchers found that Germans were not well informed about PGD and fertility treatments generally. Dr Borkenhagen said: “This study showed that there was a considerable knowledge deficiency among both infertile couples and the general German population regarding the possibilities of modern reproductive medicine. People knew about the existence of various assisted reproductive techniques, but did not necessarily understand their applications and limitations. For instance, there was a lack of basic genetic knowledge and they tended to overestimate the diagnostic possibilities of PGD; 54% of the general population said that PGD could be used to assess any kind of disease or handicap, and 23% said it could be used to indicate future characteristics such as height, eye and hair colour.”*

The study also revealed interesting attitudes to surrogacy and egg donation, both of which are illegal in Germany at present. There was a significant difference between the attitudes of the infertile couples, 63% of whom were in favour of surrogacy, and the attitudes of the general population where only 44% were in favour. There was a similar difference in attitudes to egg donation, with 90% of the infertile couples in favour, and only 51% of the general population in favour.

Dr Borkenhagen concluded: “The public needs better information about fertility treatment in general, and PGD in particular, and German legislators should consider changing the law so that it reflects public opinion on this issue and allows PGD for detecting genetic diseases.”

Dr Borkenhagen and her colleagues distributed questionnaires to 200 infertile couples, aged between 19 and 55, at the Berlin Fertility Centre between October 2003 and June 2004, and to 2,110 people, aged between 18 and 50, from East and West Germany during November 2003. Amongst the general population 1.3% had experienced some form of ART treatment. The questionnaire started with a simple explanation of PGD.