Leopoldina News 01/2011 English

Leopoldina news Deutsche Akademie der Naturforscher Leopoldina – Nationale Akademie der Wissenschaften Halle (Saale), 2 March 2011 01/2011 Dear members Recommendations on and friends of the Leopoldina, Preimplantation genetic diagnosis (PGD) is a preimplantation genetic diagnosis topic that is currently being very strongly de- bated. Before summer recess, the Bundestag Ad-hoc statement by the Leopoldina favours allowing this diagnostic wants to decide the procedure subject to strict conditions nature of this legisla- tion. In advance of this decision there On 18 January the Leopoldina publi- is a great need for cally issued and published an ad-hoc information on the statement on preimplantation genetic complex, scientific, diagnosis (PGD). This was done in medical, ethical and conjunction with acatech – the German legal relationship. Academy of Science and Engineering, The Leopoldina has reacted in this matter the Berlin-Brandenburg Academy of and has produced a statement along with Science and Humanities (BBAW) and by other German academies. This paper has not the majority of the academies belonging only fostered discussion on the topic of PGD, to the Union of German Academies of but also triggered discussion about whether Science. The underlying message of the science academies should give advice of statement: PGD is to be placed on an policy and comment on ethical questions. equal footing with prenatal diagnosis This debate is important. As a National Aca- (PD) by lawmakers and access should demy of Science, the Leopoldina has taken be given in Germany under certain on a new duty. It has been commissioned conditions to those women affected. with advising on political and social matters This prevents having to terminate preg- based on scientific knowledge. This makes it nancies where the embryo is severely more than just a society of scholars. Today, affected by hereditary disease. academies of science are a part of society more than ever and can assist in overcoming The statement entitled „Präimplanta- Title page of the Ad-hoc statement on PGD the challenges of the future. Their job is not tionsdiagnostik – Auswirkungen einer only to present facts, but also to reflect on begrenzten Zulassung in Deutschland“ and information event in the German aspects of ethics. Because what would policy (an English version will be published this parliament in Berlin. Since then it has counseling be without advice? spring) covers not only medical and legal received a great deal of public respon- aspects, but also the ethical aspects of se as part of the current debate. Parli- PGD as well. This comes in light of the amentarians want to finalize a law on Kind regards, current need for regulation, resulting regulating PGD before summer recess. from the decision made by the federal su- Further statements, for instance from preme court on 6 July 2010 that a ban on the German Ethics Council are expected PGD cannot be derived from the embryo shortly. PGD is a diagnostic procedure. protection laws. It allows people carrying a diseased gene The 30-page report was presented on to become parents of a child not suffering News 2 18 January by the members of the PGD from this severe hereditary disease. International Issues 6 workgroup at a federal press conference Continued on page 2 Events 7 People 9 Publishing Details 10 Inside the Leopoldina 11 2 01|2011 // Leopoldina / Newsletter News [Continued from page 1] PGD is to be conducted. PGD should only Prof. Dr. Christiane Nüsslein-Volhard To enable this, embryos conceived be allowed to be carried out at a handful ML, and member of the BBAW, (deve- through in-vitro fertilization are tested of facilities that are designated for this lopmental biologist, Tübingen), Prof. Dr. for this disease before being implanted in purpose and regularly checked by the Peter Propping ML (human geneticist, the uterus. An example of a similar test competent authority. PGD should only Bonn), Prof. Dr. Bettina Schöne-Seifert in the field of prenatal diagnoses, i.e. ex- be allowed if authorized by the designa- ML (medical ethicist, Münster), Prof. Dr. amination of the embryo in the womb, is ted competent authority following a sub- Jochen Taupitz ML (medical law specia- amniocentesis. As a result the pregnancy stantiated request. On top of a law gover- list, Mannheim), Prof. Dr. Anna M. Wo- may be terminated due to medical indi- ning PGD and a possible modification to bus ML, also member of the BBAW, (cell cation. The statement by the Academies the genetic diagnosis law, the passing of biologist, Gatersleben), Prof. Dr. Rüdiger formulates in summary the following a reproduction medicine law should be Wolfrum ML (legal scholar, Heidelberg) main recommendations. The text: considered.“ und Prof. Dr. Hans-Peter Zenner ML (physician, member of the Leopoldina “Due to a similar conflict situation for the The statement was produced by an Presidium, Tübingen) as leading mode- woman, PGD should be legally allowed Academy group consisting of 13 renow- rator. (mab) under limited and defined conditions and ned scientists of various fields: Prof. Dr. the consequences associated with this for Claus R. Bartram ML (human geneticist, The complete statement explaining in the embryo are to be placed by lawma- Heidelberg), Prof. Dr. Henning M. Bei- detail the basis for and the impact of the kers on an equal footing with PD (pre- er ML, who is also a member of acatech, recommendation can be found at natal diagnosis, GenDG) and pregnancy (embryology and reproduction biology, www.leopoldina.org termination (Article 218 of the German Aachen), Prof. Dr. Klaus Diedrich ML Penal Code). This equal footing is to be (gynecology and reproductive medicine Printed copies of the statement can be restricted by only allowing in vitro PGD physician, Lübeck), Prof. Dr. Philipp U. ordered from the Leopoldina by e-mail at for non-totipotent cells of the embryo, Heitz ML (Physician, member of the Le- [email protected] whereby it is recommended that condi- opoldina Steering Committee, Zurich), tions be considerably restricted. Testing Prof. Dr. Hermann Hepp ML (gynecolo- can only be done for couples whose child- gy and reproductive medicine physician, ren, from a medically objective point of Munich), Prof. Dr. Otfried Höffe ML (le- view, are at high risk of an onset of a well- gal and moral philosopher, Tübingen), known, severe monogenic disease or a genetic chromosomal disorder, or if there is a risk of a stillbirth or a miscarriage. There should be no age limit for the onset Constructive discussion on policy advice by the academies of the disease. PGD may not be used for nationally or socially defined objectives After publishing the statement, various articles appeared in the Süddeutsche Zeitung that do not concern the well-being of the and the Frankfurter Allgemeine Zeitung which covered the policy advice given by the sci- couple affected. A ban on selecting the entific academies, particularly that of the Leopoldina as a National Academy of Sciences. genetic traits of children according to the In addition to Leopoldina’s President Prof. Dr. Jörg Hacker ML, others also commented on wishes of their parents, determining the the topic including Prof. Dr. Ernst-Ludwig Winnacker ML, Prof. Dr. Otfried Höffe ML, Prof. sex of the child with no relevance to ge- Dr. Peter Graf Kielmansegg, Prof. Dr. Dietmar Willoweit, Prof. Dr. Ottfried Edenhofer and netic disease, using embryos for research Bundestag President Norbert Lammert. purposes and investigating new, in other words, non-hereditary chromosomal You can find the text of Leopoldina’s President Jörg Hacker’s “Mehr harte Fakten“ disorders (aneuploidy screening) should (“More hard facts”) on the Leopoldina’s website at: continue to exist. Furthermore a compe- www.leopoldina.org/fileadmin/user_upload/Politik/artikel_hacker_sz_20110122.pdf tent authority should be set up to pass regulatory statutes or guidelines on how 01|2011 // Leopoldina / Newsletter 3 Ernst-Ludwig Winnacker was honoured for his service to the Academy also in the context of global challenges like energy supply, climate change, the state of the oceans, the condition of the financial markets and major health problems like high infant mortality. “Science is needed everywhere we look. Problems don’t stop at borders,” says Winnacker. The foundation of the ERC in 2007 was an important step for Europe in overcoming national egotisms to a certain degree. “It is not a competition for countries, but for institutions.” Scientists go where they find the best conditions – regardless of the country. In Europe the magnets are the Swiss universities in Zurich and Lau- sanne, the universities of Cambridge and Oxford and the Free University of Ams- terdam. In Germany only the Max Planck Institutes can compete with such degree of attractiveness. “Of course it’s all about President of the Leopoldina, Jörg Hacker, presents Ernst-Ludwig Winnacker with the Medal money.” In the end, Winnacker argued of Merit in appreciation of the strong commitment the long-time Vice-President of the Aca- for taking on the “sacred cow” of EU agri- demy has shown and for his continued work for the Leopoldina. Photo: Thomas Meinicke cultural subsidies and for using this money to finance more research and science. The Academy honoured Ernst-Ludwig tem as a long-time President of the DFG Ernst-Ludwig Winnacker (born in Winnacker, its former Vice-President and to fostering young scientists. Winna- 1941) was Vice-President of the DFG from and the long-time President of the cker also helped start the “Exzellenzini- 1987 to 1993 and its President from 1998 German research foundation Deutsche tiative” (Excellence Initiative) which has to 2006. From 2007 to June 2009 he was Forschungsgemeinschaft (DFG), with fundamentally altered the higher educa- the first secretary general of the ERC in the Leopoldina’s Medal of Merit.

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