[Desire for a child and desired children--possibilities and limits of reproductive biomedicine]. / Kinderwunsch und Wunschkinder: Moglichkeiten und Grenzen der In-vitro-Fertilisations-Behandlung.

UNLABELLED: Definition of problem: BACKGROUND: Reproductive Biomedicine and new reproductive technologies (ART) belong to the fields of medicine that initiated most of the discussion on enhancement and desire fulfilling medicine in bioethics during the last years. One of the crucial questions to be answered is the definition of the right to procreate/right for a genetically related child. Closely connected are controversial opinions in regard to the definition of sterility as a disease/illness, or a mere fate, or malfunction, which does not have to be medically cured. Arguments: After a cursory description of the national and international debate, we introduce some results of our 'bioethical field studies', exploring and comparing the views of experts (human geneticists, ethicists, pediatricians, obstetricians and midwifes) and couples/patients (IVF couples, high genetic risk couples and couples with no known risk for an inherited disease or infertility problem) on sterility, the right to procreate, possibilities and appropriate limits of IVF in Germany. CONCLUSION: According to the WHO, sterility has to be defined as an illness, if the respective couples have a desire for a child. IVF can be a means for a cure. Since 2004, Germany does no longer supply a thoroughly insurer financed IVF treatment. Our surveys indicate that this change, though supported by many experts, is hard to accept for couples concerned. Only obstetricians share the WHO's view that sterility should count as an illness. Many ethicists see a proclaimed human right to procreate as merely negative right, although many support free IVF treatment for poor couples. We challenge the expert majority view on the basis of the capability approach (Amartya Sen) and functional liberalism (Herlinde Pauer Studer) and with a view to the international state of the art in IVF. The desire to have children cannot be reduced to a non-authoritative preference whose fulfillment is optional, but has to be conceptualized as a normative need that ought to be met.

What is the preimplantation embryo?

We present results from our 'bioethical field studies', which explore and compare the views of experts, patients and the general public on the beginning of human life and the status of the preimplantation embryo in Germany. Using a qualitative and quantitative multi-method approach, we found crucial differences in the categorization of the beginning of human life within the expert group (representative samples of human geneticists n=104, ethicists n=168, midwives n=294, obstetricians n=147, paediatricians n=166), and between expert and lay samples (IVF couples n=108, high genetic risk couples n=324, general population n=1017). The majority of lay respondents as well as paediatricians and obstetricians chose nidation, the moment when the implantation of the fertilized egg into the uterus takes place, as the crucial boundary that marks the beginning of human life, whereas the majority of (female) human geneticists, ethicists and midwives voted for conception as the decisive point in time. The views of all groups on the status of the preimplantation embryo differed from the assumptions underlying German legislation (Embryo Protection Act). Religiousness and religious affiliation, gender, attitudes towards disabled people, post-material values and a present desire for a child were identified as independent factors influencing attitudes towards the preimplantation embryo in the population sample. The results are discussed within a broader philosophical and social science perspective of constructivism versus essentialism, proposing a truly interdisciplinary approach to such bioethical core issues as new reproductive technologies and the status of the preimplantation embryo.

Public, expert and patients' opinions on preimplantation genetic diagnosis (PGD) in Germany.

The regulation of reproductive medicine technologies differs significantly among Western industrialized countries. In Germany, preimplantation genetic diagnosis (PGD) is prohibited due to the Embryo Protection Act, which came into force in 1991. In the last 5 years, this prohibition has been vigorously debated. In the present studies, which are part of the German research programme on ethical implications of the Human Genome Project, representative surveys were undertaken to assess the attitudes on PGD in the general population (n = 1017), five relevant expert groups (n = 879), high genetic risk couples (n = 324) and couples undergoing IVF (n = 108). All groups surveyed clearly favoured allowing PGD in Germany. Compared with the results of recently conducted population surveys in the UK and the USA, where PGD is already carried out, public approval of PGD does not differ significantly. The influence of restrictive biopolitics on the apparently liberal public opinion towards new reproductive technology seems to be marginal according to the present data, which should carefully be considered in the ongoing legislation process on human reproduction.