Dealing with complex matters: the political regulation of genetic testing and genetic counseling in Austria, Germany and Japan

Mayer, Stefanie; Biegelbauer, Peter; Grießler, Erich; Iwae, Sosuke

doi:10.1080/14636770903339928

Cited by 4 publications

(2 citation statements)

References 7 publications

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“…The introduction of medical genetics in Austria was linked to the availability of postnatal and prenatal cytogenetic analyses and the recognized need of genetic counseling in this context. In Austria, the first 'Genetische Beratungsstellen', that is, 'Genetic Counseling Centers', emerged alongside the legalization of termination of pregnancy in 1974 in Vienna and Graz; the University of Innsbruck followed in 1981 (Mayer et al, 2009;Petermann et al, 2017). These centers were not part of the hospital services but belonged to University Institutes of Medical Biology primarily dedicated to teaching and research.…”

Section: Introductionmentioning

confidence: 99%

The genetic counseling profession in Austria: Stakeholders’ perspectives

Schwaninger

Benjamin

Rudnik‐Schöneborn

et al. 2021

Journal of Genetic Counseling

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Section: Introductionmentioning

confidence: 99%

The genetic counseling profession in Austria: Stakeholders’ perspectives

Schwaninger

Benjamin

Rudnik‐Schöneborn

et al. 2021

Journal of Genetic Counseling

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“…The different country research teams (Austria, Germany, and Japan) carried out expert interviews with persons who had been involved in the negotiation, drafting, adoption, and implementation of the respective regulations. The aim of the interviews was to learn about and systematically compare the various positions, interests, and experiences of those involved in the regulatory processes so as to find commonalities and differences (Mayer, Biegelbauer, Grießler, & Iwae, 2009). c. Theory-generating expert interviews (see Meuser & Nagel, 2009) seek to elicit the specialized knowledge gained through the expert's professional activities as well as the tacit interpretive knowledge that shapes professional practices.…”

Section: Expert Interviews As a Qualitative Research Methodsmentioning

confidence: 99%

Socio-Translational Collaboration in Qualitative Inquiry

Littig

Pöchhacker

2014

Qualitative Inquiry

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In the face of long-standing neglect for issues of multilingualism in qualitative inquiry, this article proposes a novel collaborative approach to coping with translation issues in interviewing. Building on recent efforts at developing a better understanding of linguistic challenges to research methodology, the authors call for the systematic involvement of qualified interpreters and translators throughout the process of qualitative inquiry, and describe their role in all relevant stages of a research project, using expert interviews as a case in point. It is argued that such socio-translational collaboration can help ensure that social scientists engaging in qualitative inquiry will be “less lost in translation.”

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First experiences with the introduction of genetic counselors in human genetic services in the German‐speaking countries

Heidemann,

Zschocke,

Schwaninger

2024

Journal of Genetic Counseling

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In 2019, the Medical University of Innsbruck introduced the first Genetic and Genomic Counseling master's program in the German‐speaking countries. A major challenge of this process was the absence of practicing Genetic Counselors (GC) in these countries, leading to a lack of experience with GCs in medical genetic services and the absence of a legal framework for the profession. Consequently, student placements within the program commenced with neither the students nor their supervising consultants having any previous experience of collaborative teamwork between clinical geneticists and GCs. To share insights from the initial implementation phase, supervising consultants from the seven student placement institutes were invited to participate in semi‐structured interviews guided by open‐ended questions. From these interviews, three models of interprofessional teamwork between GCs and clinical geneticists emerged: (1) the alternating or tandem model, (2) qualified preliminary and follow‐up patient interviews, and (3) the provision of genetic (counseling) services without genetic counseling in the legal sense. In addition, the interviewees provided recommendations for addressing legal concerns and for the effective establishment of appropriate compensation structures for GCs within the German‐speaking countries. Clinical geneticists taking part in the study estimated that the integration of GCs could potentially enhance their counseling capacity by as much as 50%. Importantly, they did not foresee any reduction in counseling quality caused by the inclusion of GCs. This study provides evidence that the GC profession can provide additional skills to human genetic services and positively impact both patient support and overall capacity of genetic services also in the German‐speaking countries.

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Dealing with complex matters: the political regulation of genetic testing and genetic counseling in Austria, Germany and Japan

Cited by 4 publications

References 7 publications

The genetic counseling profession in Austria: Stakeholders’ perspectives

The genetic counseling profession in Austria: Stakeholders’ perspectives

Socio-Translational Collaboration in Qualitative Inquiry

First experiences with the introduction of genetic counselors in human genetic services in the German‐speaking countries

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