Qualitative study of comprehension of heritability in genomics studies among the Yoruba in Nigeria.

Qualitative study of comprehension of heritability in genomics studies among the Yoruba in Nigeria.
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DOI:
10.1186/s12910-020-00567-2
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发表时间:
2020-12-09
期刊:
影响因子:
2.7
通讯作者:
Indigene Study as part of the H3Africa Consortium
Indigene Study as part of the H3Africa Consortium
中科院分区:
人文科学2区
文献类型:
--
作者:
Taiwo RO;Ipadeola J;Yusuf T;Fagbohunlu F;Jenfa G;Adebamowo SN;Adebamowo CA;Indigene Study as part of the H3Africa Consortium

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随着非洲基因组学研究的增长,人们对知情同意的理解和充分性表示关切,因为这一领域使用的术语技术性很强。因此,我们决定研究是否有语言和文化的概念,用于沟通的字符,性状和疾病的遗传性在土著非洲人口。 我们在115名参与者中进行了焦点小组讨论,按性别,年龄和社会经济地位分层,并在25个利益相关者和生活在尼日利亚伊巴丹的约鲁巴人中的关键意见领袖中进行了关键线人访谈。我们使用的数据分析软件,采用主题的方法。v.8.3.17研究参与者确定了几个语言和文化概念,包括单词,谚语和格言,用于描述当地方言中的遗传特征,特征和疾病。这些包括可以用来描述显性和隐性特征的词,时间和通婚对遗传特征强度的影响。他们还提出,这些特征是通过“血液”传播的,无论性别如何,特定伴侣的血液可能比另一个更强。土著约鲁巴人拥有描述性格、特征和疾病遗传可能性的词汇和语言概念,可用于提高对基因组学研究中知情同意的理解和充分性。我们的方法是公开的,可以被其他非洲社区的基因组研究人员使用。
With growth of genomics research in Africa, concern has arisen about comprehension and adequacy of informed consent given the highly technical terms used in this field. We therefore decided to study whether there are linguistic and cultural concepts used to communicate heritability of characters, traits and diseases in an indigenous African population. We conducted Focus Group Discussions among 115 participants stratified by sex, age and socio-economic status and Key Informant Interviews among 25 stakeholders and Key Opinion Leaders among Yoruba living in Ibadan, Nigeria. We used Atlas-ti v.8.3.17 software to analyze the data, using thematic approach. The study participants identified several linguistic and cultural concepts including words, proverbs, and aphorisms that are used to describe heritable characters, traits and diseases in their local dialect. These included words that can be appropriated to describe dominant and recessive traits, variations in penetrance and dilution of strength of heritable characteristics by time and inter-marriage. They also suggested that these traits are transmitted by “blood”, and specific partner’s blood may be stronger than the other regardless of sex. Indigenous Yoruba populations have words and linguistic concepts that describe the heritability of characters, traits and diseases which can be appropriated to improve comprehension and adequacy of informed consent in genomics research. Our methods are openly available and can be used by genomic researchers in other African communities.
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