当前位置: X-MOL 学术Genet. Med. › 论文详情
Our official English website, www.x-mol.net, welcomes your feedback! (Note: you will need to create a separate account there.)
Knowledge, motivations, expectations, and traits of an African, African-American, and Afro-Caribbean sequencing cohort and comparisons to the original ClinSeq® cohort.
Genetics in Medicine ( IF 8.8 ) Pub Date : 2018-11-01 , DOI: 10.1038/s41436-018-0341-9
Katie L Lewis 1 , Alexis R Heidlebaugh 1 , Sandra Epps 1 , Paul K J Han 2 , Kristen P Fishler 1 , William M P Klein 1, 3 , Ilana M Miller 1 , David Ng 1 , Charlotte Hepler 1 , Barbara B Biesecker 1, 4 , Leslie G Biesecker 1
Affiliation  

PURPOSE Racial minority populations are underrepresented in genomics research. This study enrolled African-descended individuals in a sequencing study and reported their characteristics. METHODS We purposively recruited 467 individuals self-identified as African, African American, or Afro-Caribbean to the ClinSeq® study and surveyed them about knowledge, motivations, expectations, and traits. Summary statistics were calculated and compared with data from the study's original cohort, which was primarily White and self-referred. RESULTS Recruitment took five years and 83% of enrollees completed the survey. Participants had modest knowledge about benefits and limitations of sequencing (x̅s = 5.1, ranges: 0-10), and less than the original cohort (x̅ = 7.5 and 7.7, respectively). Common motivations to enroll were learning information relevant to personal health (49%) or family members' health (33%), and most had realistic expectations of sequencing. Like the original cohort, they had high levels of optimism, openness, and resilience. CONCLUSION Early adopters may have relatively consistent personality traits irrespective of majority/minority status and recruitment methods, but high levels of genomics knowledge are not universal. Research should determine whether recruitment and consent procedures provide adequate education to promote informed choices and realistic expectations, which are vital to ethical research and increasing genomics research participation in underrepresented communities.

中文翻译:

非洲、非裔美国人和非洲裔加勒比地区测序队列的知识、动机、期望和特征以及与原始 ClinSeq® 队列的比较。

目的 少数族裔人口在基因组学研究中的代表性不足。这项研究在测序研究中招募了非洲人后裔并报告了他们的特征。方法 我们有目的地招募了 467 名自称为非洲人、非裔美国人或非洲裔加勒比人的人参加 ClinSeq® 研究,并对他们的知识、动机、期望和特征进行调查。计算汇总统计数据并与研究原始队列的数据进行比较,该队列主要是白人和自我推荐的。结果 招聘历时五年,83% 的登记者完成了调查。参与者对测序的益处和局限性了解不多(x̅s = 5.1,范围:0-10),并且少于原始队列(x̅ = 7.5 和 7.7,分别)。注册的共同动机是学习与个人健康(49%)或家庭成员健康(33%)相关的信息,并且大多数人对测序有现实的期望。像最初的那群人一样,他们有高度的乐观、开放和适应力。结论 早期采用者可能具有相对一致的人格特征,与多数/少数地位和招募方法无关,但高水平的基因组学知识并不普遍。研究应确定招募和同意程序是否提供足够的教育以促进知情选择和现实期望,这对于伦理研究和增加代表性不足社区的基因组学研究参与至关重要。像最初的那群人一样,他们有高度的乐观、开放和适应力。结论 早期采用者可能具有相对一致的人格特征,与多数/少数地位和招募方法无关,但高水平的基因组学知识并不普遍。研究应确定招募和同意程序是否提供足够的教育以促进知情选择和现实期望,这对于伦理研究和增加代表性不足社区的基因组学研究参与至关重要。像最初的那群人一样,他们有高度的乐观、开放和适应力。结论 早期采用者可能具有相对一致的人格特征,与多数/少数地位和招募方法无关,但高水平的基因组学知识并不普遍。研究应确定招募和同意程序是否提供足够的教育以促进知情选择和现实期望,这对于伦理研究和增加代表性不足社区的基因组学研究参与至关重要。
更新日期:2018-11-02
down
wechat
bug