Hastings Cent Rep. 2023 Sep;53(5):10-13. doi: 10.1002/hast.1511.
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.
当今的生物医学研究招募工作侧重于纳入具有全球遗传变异代表性的参与者——这是正确的。但是，对包容性实践的民族志关注强调了这一议程如何经常转变为“掠夺性包容”，即简单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，从多样化的数据到为边缘化人群带来具体利益的问题，不能被假定为多样化数据集的副产品而自行解决。要实现基因组学的公平转化，从业者需要将祖先遗传差异的影响纳入更具影响力的社会决定因素的范围。为此，需要利用多学科专业知识，最终需要改变当前结构不平等的医疗保健系统。作为实现这一目标的适度步骤，必须制定和实施新的利益共享模式，以减轻数据捐赠者与从该数据中获利的实体之间现有的不平等。
