Balkan Journal of Medical Genetics

“WE’VE OPENED PANDORA’S BOX, HAVEN’T WE?” CLINICAL GENETICISTS’ VIEWS ON ETHICAL ASPECTS OF GENOMIC TESTING IN NEONATAL INTENSIVE CARE
Arsov T.1,2
*Corresponding Author: Todor Arsov, MD, PhD, Faculty of Medical Sciences, University Goce Delchev in Shtip, North Macedonia, E-mail: todor.arsov@ugd.edu.mk
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SUBJECTS AND METHODS

Recruitment This was an exploratory qualitative study conducted via purposive recruitment. Clinical geneticists with experience in paediatrics were identified from existing professional networks and invited (by e-mail or face to face) to take part in the study by two members of the research team (KBS, DR). Recruitment continued until data saturation was reached. Data Collection Data was collected by way of telephone interviews (conducted by the author of this manuscript in the period of December 2017 – March 2018). Interviews were carried out using a semi-structured interview guide developed by the research team and reviewed by two independent experts and were iterative, building on information learned during the process and refined. The interview guide explored participants’ experiences with genomic testing and their views on a number of ethical issues, reflecting the literature and the Investigators’ clinical and bioethics expertise. There was a mix of focused and more open-ended questions. Interviews also utilised five short case vignettes, modified from Wilkinson et al.[24] (see Supplementary File 2) which were sent to the participants prior to the interview. Interviews lasted for 60-90 minutes. Data analysis Interviews were recorded, transcribed, de-identified and coded. Coding was managed in Microsoft Excel. To check for coding concordance, 3/11 interviews were assessed by three independent coders (KBS, JF and TA) with a concordance rate of >95%. The remaining eight interviews were coded by a single coder (TA). Thematic analysis using an inductive approach was used to identify themes. [29-31] This study was approved by the Human Research Ethics Committee at the University of Sydney, Australia (Reference: 2016/050).

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