The ethics of lethal congenital malformations. Is palliative therapy possible?

Abdelbasit, Omer B.; Seidahmed, Mohammed Zain; Al-Hussein, Khalid; Miqdad, Abeer M.; Mohsen, Alsamadi M; Khalil, Mohammed I.; Almardawi, Elham; Bahyan, Rawda

doi:10.4103/jcn.jcn_39_19

Cited by 2 publications

(2 citation statements)

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“…A total of 170 articles were included in the final review (alphabetically ordered based on author in Supplementary Table 2). 1,2,7–50,55,56,68–189 A PRISMA flow diagram is presented to track the process and number of studies included and excluded (Figure 1).…”

Section: Resultsmentioning

confidence: 99%

Genetic counselling considerations with genetic/genomic testing in Neonatal and Pediatric Intensive Care Units: A scoping review

Kim,

Pistawka,

Langlois

et al. 2023

Clinical Genetics

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Genetic and genomic technologies can effectively diagnose numerous genetic disorders. Patients benefit when genetic counselling accompanies genetic testing and international guidelines recommend pre‐ and post‐test genetic counselling with genome‐wide sequencing. However, there is a gap in knowledge regarding the unique genetic counselling considerations with different types of genetic testing in the Neonatal Intensive Care Unit (NICU) and the Pediatric Intensive Care Unit (PICU). This scoping review was conducted to identify the gaps in care with respect to genetic counselling for infants/pediatric patients undergoing genetic and genomic testing in NICUs and PICUs and understand areas in need of improvement in order to optimize clinical care for patients, caregivers, and healthcare providers. Five databases (MEDLINE [Ovid], Embase [Ovid], PsycINFO [Ebsco], CENTRAL [Ovid], and CINHAL [Ebsco]) and grey literature were searched. A total of 170 studies were included and used for data extraction and analysis. This scoping review includes descriptive analysis, followed by a narrative account of the extracted data. Results were divided into three groups: pre‐test, post‐test, and comprehensive (both pre‐ and post‐test) genetic counselling considerations based on indication for testing. More studies were conducted in the NICU than the PICU. Comprehensive genetic counselling was discussed in only 31% of all the included studies demonstrating the need for both pre‐test and post‐test genetic counselling for different clinical indications in addition to the need to account for different cultural aspects based on ethnicity and geographic factors.

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Section: Resultsmentioning

confidence: 99%

Genetic counselling considerations with genetic/genomic testing in Neonatal and Pediatric Intensive Care Units: A scoping review

Kim,

Pistawka,

Langlois

et al. 2023

Clinical Genetics

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“…We suggested palliative care for congenital fatal malformations (Appendix). In addition, a study in Saudi Arabia suggested palliative care according to Islamic ethics code for severe fatal malformations with a prospective survival time between one hour and 30 days [40], with a larger list than the list suggested by Wilkinson study and shorter list compared to our guideline [39].…”

Section: Extremely Premature Infantsmentioning

confidence: 95%

Developing the First Iranian Guideline for Management of Poor Prognosis Infants

Nayeri

Asghari

Arani

et al. 2021

Preprint

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Background: Significantly improvements in the medical science and advanced in medical equipment and hospital facilities have increased the survival rate of poor prognosis infants (PPIs), including premature/extremely low birth weight, asphyxiated, and born with potentially lethal congenital disorders. However, availability of medical resources was not at the same levels across Iran’s cities. Thus, the country health care system encounters to a challenging question about providing advanced care to PPIs. Methods: The present study aimed to develop a national guideline for management of PPIs. We reviewed 120 articles, protocols, and guidelines, and held 15 sessions with 42 active participants. Semi-structured interviews were performed separately with medical specialist teams, medical ethicists, religious masters (Shia clerics), and parents of PPIs. Results & Conclusions: This guideline is the first nationwide attempt to prepare a comprehensive framework that can support prenatal counseling in Iranian hospitals with various medical facilities to achieve more homogeneity in newborn medical care. In addition, we collected an extensive list of lethal congenital malformations, genetic disorders, inborn errors of metabolism and covers the main areas of concern with a clearly states of responsibilities for decision-making regarding prenatal counseling for PPIs across Iran.

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The ethics of lethal congenital malformations. Is palliative therapy possible?

Cited by 2 publications

References 0 publications

Genetic counselling considerations with genetic/genomic testing in Neonatal and Pediatric Intensive Care Units: A scoping review

Genetic counselling considerations with genetic/genomic testing in Neonatal and Pediatric Intensive Care Units: A scoping review

Developing the First Iranian Guideline for Management of Poor Prognosis Infants

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