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- W4322720900 abstract "Abstract The implementation of next-generation sequencing (NGS) in diagnostic practice has stimulated ongoing debates on how to construct and perform ‘good’ genomic care. Our multi-sited qualitative fieldwork at two large European centers for human genetics revealed tangible ambivalence in beliefs, norms, and actions in the enactment of NGS practices across sites stemming from differing expectations, interests, demands and tensions. First, ambivalence was present around the boundaries of clinical diagnostic genetic care. The overlap between research and clinical work and diagnostics and screening led to ambivalence around ‘best’ practices and norms concerning whom to offer NGS testing and how far to take testing. Secondly, the clinical value of NGS results, especially VUS and unsolicited findings, were ambivalently valued, resulting in an inconsistent approach towards these types of findings. Thirdly, ambivalence was recognized in applying guidelines in the reality of clinical practice. In practice, such norms were often not a question of either /or but were found to be more ambivalent and context depended. The ambivalence we encountered was often not made explicit or acknowledged, failing to benefit from its possibility to encourage reflexivity and change. We propose to facilitate a more clearly outspoken ethical choreography (Thompson 2014.), where ethics and science are developed iteratively whilst welcoming different perspectives and different disciplines. Pulling experiences and practices of ambivalence into the light can help to understand the points of tensions in the values and internal logic of care practices within the clinics and facilitate a more informed, transparent, and conscious direction for genetic care." @default.
- W4322720900 created "2023-03-03" @default.
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- W4322720900 date "2023-03-02" @default.
- W4322720900 modified "2023-09-25" @default.
- W4322720900 title "Dealing with ambivalence in the practice of advanced genetic healthcare: towards an ethical choreography" @default.
- W4322720900 doi "https://doi.org/10.21203/rs.3.rs-2599910/v1" @default.
- W4322720900 hasPublicationYear "2023" @default.
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