Stanford Center for Biomedical Ethics, Stanford University, CA, USA.
Helen Diller Family Comprehensive Cancer Center, University of California San Francisco, CA, USA.
Genet Med. 2021 Aug;23(8):1424-1437. doi: 10.1038/s41436-021-01169-y. Epub 2021 May 10.
Asian Americans have been understudied in the literature on genetic and genomic services. The current study systematically identified, evaluated, and summarized findings from relevant qualitative and quantitative studies on genetic health care for Asian Americans.
A search of five databases (1990 to 2018) returned 8,522 unique records. After removing duplicates, abstract/title screening, and full text review, 47 studies met inclusion criteria. Data from quantitative studies were converted into "qualitized data" and pooled together with thematic data from qualitative studies to produce a set of integrated findings.
Synthesis of results revealed that (1) Asian Americans are under-referred but have high uptake for genetic services, (2) linguistic/communication challenges were common and Asian Americans expected more directive genetic counseling, and (3) Asian Americans' family members were involved in testing decisions, but communication of results and risk information to family members was lower than other racial groups.
This study identified multiple barriers to genetic counseling, testing, and care for Asian Americans, as well as gaps in the research literature. By focusing on these barriers and filling these gaps, clinical genetic approaches can be tailored to meet the needs of diverse patient groups, particularly those of Asian descent.
在关于遗传和基因组服务的文献中，亚洲裔美国人的研究相对较少。本研究系统地确定、评估并总结了有关亚洲裔美国人遗传保健的定性和定量研究的发现。
在五个数据库（1990 年至 2018 年）中进行搜索，共返回 8522 个独特记录。在去除重复项、摘要/标题筛选和全文审查后，有 47 项研究符合纳入标准。定量研究的数据被转化为“定性化数据”，并与定性研究的主题数据合并，以产生一套综合发现。
综合结果表明：（1）亚洲裔美国人被转介的比例较低，但对遗传服务的接受程度较高；（2）语言/沟通方面的挑战很常见，亚洲裔美国人希望得到更具指导意义的遗传咨询；（3）亚洲裔美国人的家庭成员参与了检测决策，但向家庭成员传达检测结果和风险信息的程度低于其他种族群体。
本研究确定了亚洲裔美国人在遗传咨询、检测和护理方面存在多种障碍，以及研究文献中的空白。通过关注这些障碍和填补这些空白，临床遗传方法可以根据不同患者群体的需求进行调整，特别是那些亚裔患者。
