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[2011 - 2018年生物样本库的伦理、法律和社会问题出版物。一项范围综述。]

[Ethical, legal and social issues publications on biobanks 2011-2018. A scoping review.].

作者信息

Argudo-Portal Violeta, Domènech Miquel

机构信息

Departamento de Psicología Social. Universitat Autònoma de Barcelona. Barcelona. España.

出版信息

Rev Esp Salud Publica. 2020 Jun 25;94:e202006031.

Abstract

BACKGROUND

Human-based biobanks have been presented as intermediary agents between donors/participants, the scientific community, the healthcare system, and patients. The objective of this systematic review was to contribute with an updated thematic synthesis in Spanish of the international literature (2011-2018) regarding ethical, legal, and social issues on contemporary biobanks.

METHODS

A scoping review and thematic analysis were carried out on biobanks' ethical, legal, and social issues. The following databases were searched: Web of Science, SciELO, and Dialnet. The review included 2011-2018 publications with the term "biobank" or "biobanco" in English, Spanish, Portuguese, and French.

RESULTS

A total of 153 publications were analyzed. The most published themes were: informed consent, biobanks as a scientific tool, other ethical issues, public engagement, and regulation. While documents published in English provide studies with a broader anthropologic approach and display the participatory turn, in Spanish a technical approach is more common. Aportar datos y cifras principales.

CONCLUSIONS

Publications confirm and support biobanks' relevance in current and future biomedical research, but also illustrate the entanglement of a diverse range of healthcare institutions and relations. Biobanks' techno-scientific issues cannot be split from the ethical, legal, and social ones or place them as secondary; all of them are co-produced. This review points to current topics and challenges which need to be addressed to establish transparent, accountable, dynamic, and trust-worthy biobanks.

摘要

背景

以人类为基础的生物样本库被视为捐赠者/参与者、科学界、医疗系统和患者之间的中介机构。本系统评价的目的是对2011年至2018年国际文献中有关当代生物样本库的伦理、法律和社会问题进行西班牙语的最新主题综合分析。

方法

对生物样本库的伦理、法律和社会问题进行了范围综述和主题分析。检索了以下数据库:科学引文索引、科学电子图书馆在线和西班牙学术资源图书馆。该综述纳入了2011年至2018年期间以英语、西班牙语、葡萄牙语和法语发表的包含“生物样本库”或“biobanco”一词的出版物。

结果

共分析了153篇出版物。发表最多的主题是:知情同意、生物样本库作为一种科学工具、其他伦理问题、公众参与和监管。虽然用英语发表的文献提供了更广泛的人类学方法的研究,并展示了参与转向,但在西班牙语中,技术方法更为常见。提供主要数据和数字。

结论

出版物证实并支持了生物样本库在当前和未来生物医学研究中的相关性,但也说明了各种医疗机构和关系的交织。生物样本库的技术科学问题不能与伦理、法律和社会问题分开,也不能将它们置于次要地位;所有这些都是共同产生的。本综述指出了建立透明、可问责、动态和值得信赖的生物样本库需要解决的当前主题和挑战。

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