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  1. Uncertain futures and unsolicited findings in pediatric genomic sequencing: guidelines for return of results in cases of developmental delay.Candice Cornelis, Wybo Dondorp, Ineke Bolt, Guido de Wert, Marieke van Summeren, Eva Brilstra, Nine Knoers & Annelien L. Bredenoord - 2023 - BMC Medical Ethics 24 (1):1-10.
    Background Massively parallel sequencing techniques, such as whole exome sequencing (WES) and whole genome sequencing (WGS), may reveal unsolicited findings (UFs) unrelated to the diagnostic aim. Such techniques are frequently used for diagnostic purposes in pediatric cases of developmental delay (DD). Yet policy guidelines for informed consent and return of UFs are not well equipped to address specific moral challenges that may arise in these children’s situations. Discussion In previous empirical studies conducted by our research group, we found that it (...)
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  • Scanning the body, sequencing the genome: Dealing with unsolicited findings.Roel H. P. Wouters, Candice Cornelis, Ainsley J. Newson, Eline M. Bunnik & Annelien L. Bredenoord - 2017 - Bioethics 31 (9):648-656.
    The introduction of novel diagnostic techniques in clinical domains such as genomics and radiology has led to a rich ethical debate on how to handle unsolicited findings that result from these innovations. Yet while unsolicited findings arise in both genomics and radiology, most of the relevant literature to date has tended to focus on only one of these domains. In this article, we synthesize and critically assess similarities and differences between “scanning the body” and “sequencing the genome” from an ethical (...)
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  • Psychological and Ethical Challenges of Introducing Whole Genome Sequencing into Routine Newborn Screening: Lessons Learned from Existing Newborn Screening.Fiona Ulph & Rebecca Bennett - 2022 - The New Bioethics 29 (1):52-74.
    As a psychologist and an ethicist, we have explored empirically newborn screening consent and communication processes. In this paper we consider the impact on families if newborn screening uses whole genome sequencing. We frame this within the World Health Organization’s definition of health and contend that proposals to use whole genome sequencing in newborn screening take into account the ethical, practical and psychological impact of such screening. We argue that the important psychological processes occurring in the neonatal phase necessitate a (...)
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  • Artificial placentas, pregnancy loss and loss-sensitive care.Elizabeth Chloe Romanis & Victoria Adkins - forthcoming - Journal of Medical Ethics.
    In this paper, we explore how the prospect of artificial placenta technology (nearing clinical trials in human subjects) should encourage further consideration of the loss experienced by individuals when their pregnancy ends unexpectedly. Discussions of pregnancy loss are intertwined with procreative loss, whereby the gestated entity has died when the pregnancy ends. However, we demonstrate how pregnancy loss can and does exist separate to procreative loss in circumstances where the gestated entity survives the premature ending of the pregnancy. In outlining (...)
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