What is ELSA genomics?

Zwart, Hub; Nelis, Annemiek

doi:10.1038/embor.2009.115

Cited by 42 publications

(15 citation statements)

References 14 publications

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“…Research on the ethical, legal and social implications (ELSI) of human genetics and genomics was originally developed in the context of the Human Genome Project (HGP) [ 1 , 2 ], and it is now applied in other areas of research, such as nanotechnology research and development [ 3 ]. Over the past decade, an increasing number of approaches linking social sciences research on bioethical and medical practices have reflected a wider involvement of social scientists, including ELSI researchers, in developing policies for biomedical research that are more responsive to broader social needs [ 4 - 12 ].…”

Section: Introductionmentioning

confidence: 99%

ELSI practices in genomic research in East Asia: implications for research collaboration and public participation

Yoshizawa

Zhu

et al. 2014

Genome Med

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Common infrastructures and platforms are required for international collaborations in large-scale human genomic research and policy development, such as the Global Alliance for Genomics and Health and the ‘ELSI 2.0’ initiative. Such initiatives may require international harmonization of ethical and regulatory requirements. To enable this, however, a greater understanding of issues and practices that relate to the ethical, legal and social implications (ELSI) of genomic research will be needed for the different countries and global regions involved in such research. Here, we review the ELSI practices and regulations for genomic research in six East Asian countries (China, Indonesia, Japan, Singapore, South Korea and Taiwan), highlighting the main similarities and differences between these countries, and more generally, in relation to Western countries. While there are significant differences in ELSI practices among these East Asian countries, there is a consistent emphasis on advancing genomic science and technology. In addition, considerable emphasis is placed on informed consent for participation in research, whether through the contribution of tissue samples or personal information. However, a higher level of engagement with interested stakeholders and the public will be needed in some countries.

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Section: Introductionmentioning

confidence: 99%

ELSI practices in genomic research in East Asia: implications for research collaboration and public participation

Yoshizawa

Zhu

et al. 2014

Genome Med

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“…1. El programa ELSI se establece con el Programa Genoma Humano a inicios de 1990 en los Estados Unidos y tenía como misión anticipar las implicaciones éticas, legales y sociales de la genética y la genómica, mientras que el enfoque ELSA reconoce desde sus orígenes la necesidad de ampliar su ámbito de investigación y desbordar la naturaleza lineal que representa el estudio de las implicaciones (Zwart y Nelis, 2009;Zwart, Landeweerd y van Rooij (2014). No obstante, hay una diversidad y heterogeneidad de perspectivas y métodos sobre la práctica de la ética en las actividades científico-tecnológicas (véase Reijers et al, 2017).…”

Section: Notasunclassified

¿Nuevos patrones de investigación? Dinámicas de apertura y cierre en el proceso de integración socio-técnica

Eizagirre

2019

Arbor

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La formulación de las políticas de investigación y desarrollo está siendo transformada de manera novedosa en los documentos más recientes que se elaboran en Europa. Una de las peculiaridades es que los patrones de investigación transitan hacia prácticas científico-tecnológicas más interactivas entre los distintos actores de la sociedad. Así, como respuesta a la naturaleza compleja de la investigación las primeras medidas se revelan en aquellas estrategias para la promoción de actitudes emprendedoras y colaborativas entre los actores académico-empresariales de la investigación y el desarrollo. A estas iniciativas se superponen otros planteamientos que trascienden el objetivo primariamente economicista de la colaboración e integran los aspectos sociales y éticos en la investigación y el desarrollo. Sin embargo, estas transformaciones también están sujetas a diversas tensiones de base y a objetivos concurrentes. El artículo dilucida estas dinámicas de apertura-y-cierre y manifiesta que algunas de las relaciones y demandas se muestran más resistentes al cambio.

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“…When appointed as the first director of the HGP, James Watson resolved that the U.S. National Institutes of Health should allocate part of its funds to study the ELSI of genomics in the face of unprecedented challenges posed by genomics and its future application. Research into the ELSI of genomics was initiated first in the USA, thence spreading to Canada and Europe (Zwart and Nelis, 2009). Awareness of the issues in the East happened much later, but such research was supposed to study similar issues as those in the West for the purpose of some outcomes leading to better regulation of genomics.…”

Section: Regulationmentioning

confidence: 99%