Indigenous Peoples and genomics: Starting a conversation
Indigenous Peoples and genomics: Starting a conversation
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DOI：
10.1002/jgc4.1073
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发表时间：
2019-04-01
影响因子：
1.9
通讯作者：
Birch, Patricia H.
中科院分区：
文献类型：
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作者：
Morgan, Jenny;Coe, Rachel R.;Birch, Patricia H.
与欧洲祖先群体相比，由于参考数据库中的不代表性，加拿大土著更有可能获得无法解释的全基因组测序结果。我们开始与土著加拿大人对话，以提高认识，并为这个问题发声。我们共同制作了一个视频，解释基因组的非代表性，其中包括不同的土著观点。我们录音的焦点小组，包括30个第一民族，梅蒂斯人，因纽特人生活在大温哥华。在观看了解释基因组测试的介绍性视频后，与会者讨论了围绕收集土著基因组数据、控制和使用的问题。对成绩单进行了分析，并将参与者代表主题的引用纳入了介绍性视频。土著与会者讨论了数据的解释，并同意使用引文。提供反馈的20名参与者同意主题解释：系统性种族主义交织了大多数对话，特别是在信任主题内。治理主题强调隐私和对歧视的恐惧。一些与会者认为，一个单独的、由土著人控制的数据库是必不可少的;另一些与会者承认国际数据库的优点。实施的主题包括收集土著基因组的创造性想法，但强调要得到土著领导人的事先批准。最后的视频（https：//youtu.be/-wivIBDjoi8）与与会者分享，以促进对基因组诊断不平等的认识和持续讨论。
Compared to European ancestral groups, Indigenous Canadians are more likely to have uninterpretable genome-wide sequencing results due to non-representation in reference databases. We began a conversation with Indigenous Canadians to raise awareness and give voice to this issue. We co-created a video explaining genomic non-representation that included diverse Indigenous view-points. We audio-recorded the focus groups including 30 First Nations, Metis, and Inuit individuals living in Greater Vancouver. After watching an introductory video explaining genomic testing, participants discussed issues surrounding collecting Indigenous genomic data, its control, and usage. Transcripts were analyzed, and participants' quotes representing main themes were incorporated into the introductory video. Indigenous participants discussed data interpretation and gave approval for quote usage. The 20 participants who provided feedback concurred with the thematic interpretation: Systemic racism interlaced most conversations, particularly within the theme of trust. Themes of governance emphasized privacy and fear of discrimination. Some participants thought a separate, Indigenous-controlled database was essential; others recognized advantages of international databases. The theme of implementation included creative ideas to collect Indigenous genomes, but prior approval from Indigenous leaders was emphasized. The final video (https://youtu.be/-wivIBDjoi8) was shared with participants to use as they wish to promote awareness and ongoing discussion of genomic diagnostic inequity.