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      Healthy, happy, rational: reflections on genetic counselling in the GDR

      research-article
      Medical Humanities
      BMJ Publishing Group
      Medical humanities, Genetics, History

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          Abstract

          The development of genetic counselling in the German Democratic Republic (GDR) was closely connected to a well-established system of prenatal care and a process that placed reproductive decisions in the hands of women. It was embedded in the pronatalist reproductive policy of the GDR and a narrative of medical and (socialist) humanistic progress. As in other countries at that time, it promoted the goal of avoiding the birth of children with disabilities and was hence based on ableist premises. In this paper, I focus on communicative aspects of genetic counselling, as it was established in the 1970s and 1980s in university and district clinics. Thus, on the one hand I explore the communication of genetic counselling to the public; and on the other, I study the communication processes in genetic counselling centres themselves. In contrast to the USA, where the ‘genetic counsellor’ became established as a professional identity in the 1970s, there was no distinct profession of ‘genetic counsellor’ in the GDR. Instead, counselling was practised by physicians or biologists with a special interest in human genetics. This resulted in a strong emphasis in these clinical encounters on diagnosis and technical solutions, as well as an educational impetus. I propose that an important goal of genetic counselling in the GDR was to generate a sense of ‘rationality’ in prospective parents. To achieve this, those advocating and giving counselling explicitly sought to distance this practice from the eugenic ideas of the past, and to dispel superstitious ideas of heredity and religious ideas of fate. In addition, they attempted to alleviate emotions such as fear and guilt. It was in that context that counselling physicians and biologists provided interpretations of genetic findings, risk figures and disease values. I show how different interests and experiences shaped these and how risk evaluations structured counsellor-counsellee communication.

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          Boundary-Work and the Demarcation of Science from Non-Science: Strains and Interests in Professional Ideologies of Scientists

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            The Global State of the Genetic Counseling Profession

            The profession of genetic counseling (also called genetic counselling in many countries) began nearly 50 years ago in the United States, and has grown internationally in the past 30 years. While there have been many papers describing the profession of genetic counseling in individual countries or regions, data remains incomplete and has been published in diverse journals with limited access. As a result of the 2016 Transnational Alliance of Genetic Counseling (TAGC) conference in Barcelona, Spain, and the 2017 World Congress of Genetic Counselling in the UK, we endeavor to describe as fully as possible the global state of genetic counseling as a profession. We estimate that in 2018 there are nearly 7000 genetic counselors with the profession established or developing in no less than 28 countries.
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              Special Supplement: The Disability Rights Critique of Prenatal Genetic Testing Reflections and Recommendations

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                Author and article information

                Journal
                Med Humanit
                Med Humanit
                medhum
                mh
                Medical Humanities
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                1468-215X
                1473-4265
                June 2023
                3 February 2023
                : 49
                : 2
                : 236-247
                Affiliations
                [1] departmentInstitute of the History of Medicine and Ethics in Medicine , Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt Universität zu Berlin , Hindenburgdamm 30, 12203 Berlin, Germany
                Author notes
                [Correspondence to ] Dr Susanne Doetz, Institute of the History of Medicine and Ethics in Medicine, Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt Universität zu Berlin, Berlin 12203, Germany; susanne.doetz@ 123456charite.de
                Article
                medhum-2022-012471
                10.1136/medhum-2022-012471
                10359569
                36737237
                d22abc13-2393-4fe0-bd5c-cff285a6e320
                © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

                This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

                History
                : 16 November 2022
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100001659, Deutsche Forschungsgemeinschaft;
                Award ID: Temporary Position for Principal Investigators
                Categories
                Original Research
                1506
                Custom metadata
                unlocked

                medical humanities,genetics,history
                medical humanities, genetics, history

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