On July 7, 2011, the German Bundestag sent a clear signal with its decision on the regulation of preimplantation genetic diagnosis (PGD) in accordance with the draft regulation presented by MPs Ulrike Flach, Peter Hintze, Dr. Carola Reimann, Dr. Petra Sitte and Jerzy Montag. The decision taken by Parliament and also supported by the HVD shows that the individual interests and needs of parents should be decisive in the future application of PGD. The ordinance on the use of PGD in Germany, which has yet to be passed, must also do justice to this clear signal. The law stipulates, among other things, that applications for the use of PGD must be approved by an interdisciplinary ethics committee. In the view of the HVD, it must therefore be ensured in the forthcoming regulation that the role and composition of the ethics committee in the PGD regulation does not become a back door for the proponents of a complete ban on PGD in Germany. For example, it is out of the question that the two official churches are explicitly allowed to send their representatives to the commission to be formed. “Both the resolutions of the Council of the Protestant Church in Germany, but above all the bishops of the Catholic Church, have made it clear in the run-up to the Bundestag decision what their position is on the approval of PGD and also on the question of independent decisions by responsible parents. Although we have heard the differentiated and passionate pleas of Christian politicians for the provisionally adopted regulation and expressly welcome it in the interests of humanity, the official position of the two churches is to advocate a complete rejection of PGD,” stated HVD President Prof. Frieder Otto Wolf. Involving representatives sent by these churches in the ethics commission to be formed would contradict the clear direction of the parliamentary resolution. The HVD points out that the parliamentary resolution is also only just in line with the views of the people in Germany, among whom, according to a recent survey by the University of Düsseldorf, there were high approval ratings even for a broad authorization of PGD. “The appointment of official church representatives would also not be logically consistent. Such members of the ethics committee would only have the choice of making judgments that contradict the position adopted by their churches or consistently voting for the rejection of applications. This is hardly a suitable starting point for the differentiated assessment of individual cases in an ethics committee,” Wolf continued. Moreover, the HVD, as a representative of the interests of non-denominational people, considers the outdated one-sided inclusion of representatives of specific religions, as can be seen, for example, in the privileged appointment of members to the German Ethics Council or to public broadcasting bodies, to be outdated and discriminatory. In any case, the future ethics committee cannot be given the task of defending religiously based positions or positions characterized by irrational fear in its decision-making. “People who reject PGD because of their faith will not come into contact with the ethics committee anyway.
And even after the recent Bundestag decision, all believers are still entitled not to make use of PGD for themselves personally. This must be taken into account in the regulation on the PGD procedure, just as it was in the previous legislative process.” Politicians should also not fall back into the pronounced paternalism that characterized the demand for a total ban on the use of PGD. Ultimately, the task of the ethics committee will be to make judgments on the applications of those people who wish to include the use of PGD in their decision for their own offspring. It is therefore right to include experienced doctors and philosophers in the commission. “The judgment of experts in the field of medical and ethical issues is important when decisions with major implications for parents or families are to be made. This was demonstrated, among other things, by the statement made by CDU minister and doctor of medicine Ursula von der Leyen when she supported the regulation that was ultimately passed in parliament,” says Frieder Otto Wolf. The HVD can therefore also support the call for the important experience of people with disabilities or expertise from the care and life support sector to be taken into account. Wolf: “The experiences and observations of people who have experienced the hurdles and also the opportunities of living with a disability first-hand should not be excluded across the board. They could provide valuable perspectives for decision-making.” In the view of the HVD, debates on a future regulation on the use of PGD must in any case focus on the fact that the interests of parents play a prominent role. The Humanist Association therefore considers it particularly important to focus in future on the comprehensive organization of medical and psychosocial counselling in the run-up to this personal decision. The HVD sees the future Ethics Commission primarily as a body that examines, supports and promotes the open-ended and competent counseling of people willing to undergo PGD. “For us, the ability to self-determination is a central motive in the question of how people should decide. We therefore see the detailed and reality-based education and information of affected parents about the actual possibilities, prospects of success and burdens of PGD as a key element before any decision for or against this measure,” explains Frieder Otto Wolf.
