“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
page: 8
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Abstract
The increasing use of genomic testing in neonatal
intensive care units (NICU) gives rise to ethical issues.
Yet little is known regarding what health professionals
implementing the testing think about its ethical aspects. We
therefore explored the views of Australian clinical geneticists
towards ethical issues in the use of genomic testing in
the Neonatal Intensive care Unit (NICU). Semi-structured
interviews with 11 clinical geneticists were conducted,
transcribed and analysed thematically. Four themes were
identified: 1) Consent: the craft is in the conversation, which
encapsulated the challenges in the consent process, and
with pre-test counseling; 2) Whose autonomy and who
decides? This illustrates the balancing of clinical utility and
potentially harms the test, and how stakeholder interests are
balanced; 3) The winds of change and ethical disruption,
recognizing that while professional expertise is vital to
clinical decision-making and oversight of mainstreaming,
participants also expressed concern over the size of the genetics
workforce and 4). Finding Solutions – the resources
and mechanisms to prevent and resolve ethical dilemmas
when they arise, such as quality genetic counseling, working
as a team and drawing on external ethics and legal
expertise. The findings highlight the ethical complexities
associated with genomic testing in the NICU. They suggest
the need for a workforce that has the necessary support and
skills to navigate the ethical terrain, drawing on relevant
ethical concepts and guidelines to balance the interests of
neonates, their careers and health professionals.
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