A scoping review of genetics and genomics research ethics policies and guidelines for Africa.
A scoping review of genetics and genomics research ethics policies and guidelines for Africa.
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DOI：
10.1186/s12910-021-00611-9
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发表时间：
2021-04-02
影响因子：
2.7
通讯作者：
Ochieng J
中科院分区：
文献类型：
--
作者：
Ali J;Cohn B;Mwaka E;Bollinger JM;Kwagala B;Barugahare J;Sewankambo NK;Ochieng J
遗传学和基因组学研究（GGR）越来越多地在世界各地进行;然而，许多国家的研究人员和研究监督实体一直在努力应对伦理挑战。需要通过与当地环境相结合的综合政策框架来解决一系列道德和监管问题。虽然已经作出了重要努力，包括通过非洲卫生组织倡议，加强对绿色生殖伦理层面的理解和认识，但仍需要在国家一级进行深入的政策审查，以通报和促进非洲大陆地方政策的制定和修订。为了确定和描述非洲大部分地区适用于GGR的现有道德相关指南和法律，我们对通过数据库、存储库和网络搜索确定的英语政策文件进行了范围审查。36份文件被纳入并使用一个框架进行编码，该框架包含五个分析类别的一系列主题：（1）尊重，（2）善行，（3）正义，（4）独立监督，（5）禁令和禁令。使用数据分析软件（NVivo 12）根据文件特征和主题组织、编码和制表信息。选择了一些说明政策要求的例子供列入。符合纳入标准的文件跨越20年;发表于1996年至2018年之间，大多数（58%）发表于2009年之后。大约三分之二被称为“指导方针”，略多于一半是非排他性的GGR。所确定的国家一级文件中只有很少（6份）是专门针对全球绿色报告的。与其他原则和程序相比，与“尊重”原则有关的要求在所有文件中出现的频率最高。最常见的禁令是禁止生殖性克隆。其他禁令适用于生殖系编辑，研究中的不当诱导，用于商业目的的样本使用，员工强制性DNA检测，胎儿性别选择，干细胞使用，优生学和没有公共卫生利益的研究。在许多非洲国家，对绿色增长的道德行为和审查不可或缺的可执行政策要么不足，要么缺失。现有的国际性、针对GGR的道德准则可用于在国家一级为GGR政策制定提供信息，并结合国家特定道德委员会和其他当地利益相关者的见解。
Genetics and genomics research (GGR) is increasingly being conducted around the world; yet, researchers and research oversight entities in many countries have struggled with ethical challenges. A range of ethics and regulatory issues need to be addressed through comprehensive policy frameworks that integrate with local environments. While important efforts have been made to enhance understanding and awareness of ethical dimensions of GGR in Africa, including through the H3Africa initiative, there remains a need for in-depth policy review, at a country-level, to inform and stimulate local policy development and revision on the continent. To identify and characterize existing ethics-related guidelines and laws applicable to GGR across much of Africa, we conducted a scoping review of English language policy documents identified through databases, repositories, and web searches. Thirty-six documents were included and coded using a framework that contained a range of themes across five analytical categories: (1) respect, (2) beneficence, (3) justice, (4) independent oversight, and (5) bans and prohibitions. Data analysis software (NVivo 12) was used to organize, code, and tabulate information according to document characteristics and topics. Illustrative examples of policy requirements were selected for inclusion. Documents that met inclusion criteria spanned 20 years; published between 1996 and 2018, with the majority (58%) published after 2009. About two-thirds were denoted as “guidelines,” and slightly more than half were non-exclusive to GGR. Very few (six) country-level documents identified were specific to GGR. Requirements related to the principle of “respect” appeared most often across all documents, relative to other principles and processes. The most commonly stated ban was on reproductive cloning. Other prohibitions applied to germline editing, undue inducements in research, sample use for commercial purposes, employee mandatory DNA testing, fetal sex selection, stem cell use, eugenics, and research without public health benefits. Enforceable policies that are indispensable to the ethical conduct and review of GGR are either deficient or missing in many African countries. Existing international, GGR-specific ethics guidelines can be used to inform GGR policy development at a country-level, in conjunction with insight from country specific ethics committees and other local stakeholders.
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DOI：
10.1186/1748-5908-5-69
发表时间：
2010-09-20
期刊：
Implementation science : IS
影响因子：
--
作者：
Levac D;Colquhoun H;O'Brien KK
通讯作者：
O'Brien KK
影响因子：
2.7
作者：
de Vries, Jantina;Munung, Syntia Nchangwi;Tindana, Paulina
通讯作者：
Tindana, Paulina
影响因子：
8.8
作者：
Beaton, Angela;Hudson, Maui;Wihongi, Helen
通讯作者：
Wihongi, Helen
影响因子：
2.7
作者：
Barchi F;Little MT
通讯作者：
Little MT
影响因子：
2.2
作者：
Barugahare, John;Kutyabami, Paul
通讯作者：
Kutyabami, Paul