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1.
Eur J Hum Genet ; 31(4): 395-408, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36631542

RESUMEN

Reproductive genetic carrier screening (RGCS) for hundreds of different genetic conditions is technically available for prospective parents, but these tests have not been integrated in a public health policy except for specific sub-groups. We aimed to provide an overview of the perspectives of multiple professional stakeholder groups in order to enhance a responsible implementation of population-based reproductive genetic carrier screening. We conducted a systematic literature search using eight online databases focussing on studies that were published from January 2009 to January 2021. We selected articles dealing with attitudes and opinions from different professional stakeholders, in particular healthcare professionals and policymakers, on how to implement a policy about carrier screening for a reproductive purpose. We identified 18 studies that met our inclusion criteria. Based on our inductive analysis, we identified ten themes categorized in both clinical and program management challenges: ensuring availability of RGCS to all couples who request the test, embedding RGCS as a test offer before pregnancy, providing clear and reliable information, ensuring voluntary participation, developing genetic counselling pre- and post-testing (after positive or negative result), avoiding psychological harm, ensuring equal access, avoiding social pressure, educating and involving a broad spectrum of non-genetic health care professionals, and promoting an independent non-commercial organisational structure. We highlight one major stumbling block on how to responsibly inform couples about hundreds different genetic conditions within constraints regarding time and ability of non-genetic professionals. We promote further research to tackle the issues brought up by this systematic review through pilot studies. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews PROSPERO 2021 # CRD42021233762; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=233762 .


Asunto(s)
Asesoramiento Genético , Trastornos del Movimiento , Femenino , Humanos , Embarazo , Tamización de Portadores Genéticos , Personal de Salud
2.
Dev World Bioeth ; 22(1): 15-22, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-33644955

RESUMEN

The Global Kidney Exchange (GKE) program, introduced by Rees et al. (2017), has been described as an innovative method to address the global shortage of kidneys for the purpose of transplantation. However, the concept of the GKE has evoked controversy and various international bodies have accused it of being a form of low- and middle-income country (LMIC) exploitation. Using Julian Koplin's framework of exploitation, we consider three different conceptualizations of wrongful advantage taking in the unique setting formed by the GKE. The analysis contributes to a better understanding of the controversy and gives insight into how to deal with background conditions that influence the fairness of such a global social cooperation.


Asunto(s)
Trasplante de Riñón , Obtención de Tejidos y Órganos , Humanos , Riñón , Pobreza
3.
Xenotransplantation ; 28(6): e12707, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-34850461

RESUMEN

BACKGROUND: The supply of human organs available for transplantation remains grossly inadequate globally. Animal-to-human transplantation, and even more so humanized organ grown in animals, holds promising results for the start of clinical trials in humans. Very little is known about the public's willingness to accept different xenotransplantation techniques. This study aims to determine attitudes toward human-to-human transplantation, animal-to-human transplantation, and chimera-to-human transplantation in the Belgium context. METHODS: Secondary school students from Flanders, Belgium, were surveyed between January and June 2019. Socio-demographic details likely to influence participants' attitudes were gathered. Participants were presented with three hypothetical cases (human-to-human transplantation, animal-to-human transplantation, and chimera-to-human transplantation) and asked about their willingness to accept the particular organ. Their risk appetite to accept organs with potentially worse outcomes than the status quo was also evaluated. RESULTS: Seven hundred forty-one complete questionnaires were analyzed. It can be concluded that Flemish secondary school students favored the techniques of xenotransplantation to a lesser extent than allotransplantation; however, most of them did consider it a good solution for organ shortage. Compared to animal-to-human transplantation, chimera-to-human transplantation showed a more positive attitude among the respondents when considered a good organ transplantation solution. CONCLUSION: Flemish secondary school students favored the techniques of xenotransplantation to a lesser extent than allotransplantation; however, most of them did consider it a good solution for organ shortage. In comparison to animal-to-human transplantation, chimera-to-human transplantation showed a more positive attitude among the respondents when considered a good solution for organ transplantation.


Asunto(s)
Trasplante de Órganos , Obtención de Tejidos y Órganos , Animales , Actitud , Humanos , Instituciones Académicas , Estudiantes , Encuestas y Cuestionarios , Trasplante Heterólogo
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