将多种族和多民族经验纳入遗传咨询实践和研究:一个必要的机会
Chenery Lowe1, Justin Gomez-Stafford2, Daphne O Martschenko1
1Center for Biomedical Ethics, Department of Pediatrics, Stanford University, Stanford, California, USA.
Journal of genetic counseling
|October 7, 2024
概括
将种族与遗传祖先混为一谈会损害公平的医疗保健. 超越严格的种族类别对于公平的基因组医学和所有人的包容性遗传咨询至关重要.
科学领域:
- 遗传学和基因组学 在
- 生物伦理学生物伦理学
- 科学社会学科学社会学
背景情况:
- 种族和遗传祖先的融合在历史上证明了不平等,并继续影响基因组研究和临床应用.
- 基因服务中的种族和种族分类系统限制了基因组技术的公平转换.
- 由于分类限制,多种族和多民族的个人在获得基因组发现的好处时经常面临挑战.
研究的目的:
- 检查在基因组研究和临床护理中将种族与遗传祖先混为一谈的有害后果.
- 要强调如何分离的种族和民族分类延续不平等的利益分享在基因组技术翻译.
- 在遗传咨询中解决多种族/多民族个体在遗传咨询中的具体挑战和机会.
主要方法:
- 在遗传学和基因组学中对种族,种族和遗传祖先的文学评论和概念分析.
- 检查遗传服务提供中多样性的现有框架.
- 讨论对患者护理和纳入遗传咨询的影响.
主要成果:
- 在遗传服务提供中依赖分立的种族/民族类别,破坏了对基因组技术的公平获取.
- 多种族和多民族的个人不成比例地被排除在基因组学进步的好处之外.
- 遗传学当前的多样性框架使不公平的患者护理延续,并在遗传咨询中限制归属.
结论:
- 挑战单种族和单族类别的范式对于减轻基因组医学中的种族不平等至关重要.
- 包容性遗传咨询需要超越离散分类,接受患者身份的复杂性.
- 基因组技术的公平转化需要在多样性如何被概念化和解决方面发生根本性的转变.
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