pre-implantation genetic diagnosis update

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Current legislation on preimplantation genetic diagnosis in Germany does

not reflect the views of the general public

News-Medical.Net Monday, 28-Jun-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.

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