Fisher Center for Familial Cancer Research, Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC 20007, USA.
Fisher Center for Familial Cancer Research, Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC 20007, USA.
Soc Sci Med. 2014 Aug;114:26-37. doi: 10.1016/j.socscimed.2014.05.014. Epub 2014 May 15.
This study examines communication about limitations of genomic results interpretation for colon cancer risk during education and counseling of minority participants. As part of a larger study conducted from 2010 to 2012, participants recruited from a large primary care clinic were offered testing for a research panel of 3 genomic markers (single nucleotide polymorphisms or SNPs) for colorectal cancer risk. Genetic counselors conducted pre- and post-test sessions which included discussion of limitations of result interpretation due to the lack of racial/ethnic diversity in research populations from which risk data are derived. Sessions were audio-recorded, transcribed and thematically analyzed. Many participants did not respond directly to this limitation. Among the participants that responded directly to this race-related limitation, many responses were negative. However, a few participants connected the limited minority information about SNPs with the importance of their current research participation. Genetic counselor discussions of this limitation were biomedically focused with limited explanations for the lacking data. The communication process themes identified included: low immediacy (infrequent use of language directly involving a participant), verbal dominance (greater speaking ratio of the counselor to the patient) and wide variation in the degree of interactivity (or the amount of turn-taking during the discussion). Placed within the larger literature on patient-provider communication, these present results provide insight into the dynamics surrounding race-related educational content for genomic testing and other emerging technologies. Clinicians may be better able to engage patients in the use of new genomic technology by increasing their awareness of specific communication processes and patterns during education or counseling sessions.
本研究考察了在少数民族参与者的教育和咨询过程中，有关结直肠癌风险的基因组结果解释局限性的沟通情况。作为 2010 年至 2012 年期间进行的一项更大研究的一部分，从一家大型初级保健诊所招募的参与者被提供了针对研究面板的 3 个基因组标记（单核苷酸多态性或 SNPs）的测试，用于结直肠癌风险。遗传咨询师进行了测试前和测试后的会议，其中包括讨论由于缺乏种族/民族多样性，导致从研究人群中得出的风险数据存在局限性的结果解释。会议进行了录音、转录和主题分析。许多参与者没有直接回应这个局限性。在直接回应与种族相关的局限性的参与者中，许多回应是负面的。然而，少数参与者将关于 SNPs 的有限的少数民族信息与他们当前研究参与的重要性联系起来。遗传咨询师对这一局限性的讨论以生物医学为重点，对缺乏数据的解释有限。确定的沟通过程主题包括：即时性低（很少使用直接涉及参与者的语言）、口头主导（咨询师对患者的讲话比例更大）以及互动程度的差异很大（或讨论过程中的交流次数）。将这些结果置于关于患者与提供者沟通的更广泛文献中，可以深入了解与基因组测试和其他新兴技术相关的与种族有关的教育内容的动态。临床医生可以通过提高他们在教育或咨询会议期间对特定沟通过程和模式的认识，更好地让患者参与使用新的基因组技术。
