The Pitfalls of Genomic Data Diversity.
The Pitfalls of Genomic Data Diversity.
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DOI：
10.1002/hast.1511
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发表时间：
2023-09
影响因子：
3.3
通讯作者：
Walker, Alexis
中科院分区：
文献类型：
--
作者：
Jabloner, Anna;Walker, Alexis
如今，生物医学研究人员的招聘重点是包括代表全球遗传变异的参与者，这是理所当然的。但人种学对包容性实践的关注突出了这一议程如何经常转变为“掠夺性包容”，简单化地推动黑人和棕色人种进入基因组数据库。作为医学人类学家，我们认为，如何从多样化的数据中为边缘化人群带来具体利益的问题，不能被认为是多样化数据集的副产品。为了实现基因组学的公平翻译，从业者需要将祖先遗传差异的影响置于更具影响力的社会决定因素的范围内。要实现这一目标，需要利用多学科专业知识，并且当前结构不平等的医疗保健系统最终需要进行变革。作为实现这一目标的适度步骤，必须开发和实施新的利益分享模式，以减轻数据捐赠者和从数据中获利的实体之间现有的不平等。
Biomedical research recruitment today focuses on including participants representative of global genetic variation—rightfully so. But ethnographic attention to practices of inclusion highlights how this agenda often transforms into “predatory inclusion,” simplistic pushes to get Black and brown people into genomic databases. As anthropologists of medicine, we argue that the question of how to get from diverse data to concrete benefit for people who are marginalized cannot be presumed to work itself out as a byproduct of diverse datasets. To actualize the equitable translation of genomics, practitioners need to place the impacts of ancestral genetic difference in the scope of much more impactful social determinants. For this to happen, multidisciplinary expertise needs to be leveraged, and current, structurally unequal health care systems ultimately need to transform. As modest steps toward this goal, new models for benefit‐sharing must be developed and implemented to mitigate existing inequality between data donors and the entities profiting from that data.
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影响因子：
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作者：
通讯作者：
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影响因子：
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作者：
Munung, Nchangwi Syntia;de Vries, Jantina
通讯作者：
de Vries, Jantina
DOI：
10.1017/jme.2021.34
发表时间：
2021
期刊：
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
影响因子：
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作者：
Creary MS
通讯作者：
Creary MS
DOI：
10.1016/j.xgen.2022.100150
发表时间：
2022-07-13
期刊：
CELL GENOMICS
影响因子：
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作者：
Dolan, Deanne Dunbar;Lee, Sandra Soo-Jin;Cho, Mildred K.
通讯作者：
Cho, Mildred K.
影响因子：
3.7
作者：
Ahmed, Eman;Shabani, Mahsa
通讯作者：
Shabani, Mahsa