Purpose: The aim of the study was to characterize experiences of Latino participants receiving genomic screening results. Methods: Participants were recruited at a federally qualified health center in the USA. In-person, semi-structured interviews were conducted in either Spanish or English by a bilingual, bicultural interviewer. Questions focused on motivations for pursuing genomic sequencing, concerns about receiving genomic screening results, and perceived benefits of receiving genomic information. Interviews were audio-recorded, transcribed, and translated. Results: Fifty individuals completed an interview; 39 were conducted in Spanish. Participants described mixed motivations for pursuing genomic screening. Participants viewed the benefits of genomic screening in relation to not only their personal health but to the health of their families and their communities. Participants tended to have few concerns about genomic screening. Those concerns related to potential loss of privacy, misuses of genomic information, and the possibility of receiving distressing results. Some participants had misunderstandings about the scope of the test and the potential implications of their results. Most felt it was better to know about a genetic predisposition to disease than to remain uninformed. Participants felt that genomic screening was worthwhile. Discussion: This is one of the first studies to examine the experiences of Latino individuals receiving genomic screening results. Our results suggest that many Latino patients in the US see value in genomic screening and have limited concerns about its potential to cause harm. These results inform ongoing efforts to increase the availability of genomic medicine to underrepresented populations and add to our understanding of sociocultural drivers in the adoption of precision medicine.
Public Health Genomics

中文翻译：

---

拉丁裔参与者接受中性基因组筛查结果的经历：定性研究

目的：该研究的目的是描述拉丁裔参与者接受基因组筛查结果的经历。方法：参与者是在美国联邦合格的健康中心招募的。面对面的半结构化访谈是由双语、双文化访谈者用西班牙语或英语进行的。问题集中在追求基因组测序的动机、对接收基因组筛查结果的担忧以及接收基因组信息的感知好处。采访内容均经过录音、转录和翻译。结果：五十人完成了采访；39 场以西班牙语进行。参与者描述了进行基因组筛查的复杂动机。参与者认为基因组筛查的好处不仅关系到他们的个人健康，而且关系到他们的家庭和社区的健康。参与者往往对基因组筛查不太担心。这些担忧涉及潜在的隐私丧失、基因组信息的滥用以及收到令人痛苦的结果的可能性。一些参与者对测试的范围及其结果的潜在影响存在误解。大多数人认为了解疾病的遗传倾向比不知情要好。参与者认为基因组筛查是值得的。讨论：这是首批调查拉丁裔个体接受基因组筛查结果经历的研究之一。我们的结果表明，美国的许多拉丁裔患者看到了基因组筛查的价值，并且对其潜在危害的担忧有限。这些结果为我们正在进行的努力提供了信息，以提高基因组医学对代表性不足人群的可用性，并加深我们对采用精准医学的社会文化驱动因素的理解。
公共卫生基因组学