What's the Harm? Genetic Counselor Perceptions of Adverse Effects of Genetics Service Provision by Non-Genetics Professionals
What's the Harm? Genetic Counselor Perceptions of Adverse Effects of Genetics Service Provision by Non-Genetics Professionals
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DOI：
10.1007/s10897-013-9605-3
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发表时间：
2014-02-01
影响因子：
1.9
通讯作者：
Niendorf, Kristin B.
中科院分区：
文献类型：
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作者：
Bensend, Tracy A.;Veach, Patricia McCarthy;Niendorf, Kristin B.
坊间报道表明，一些患者因接受非遗传学提供者的遗传学服务而经历了负面结果，但这些事件及其结果的经验证据有限。这项研究调查了遗传咨询师对明尼苏达州发生此类事件的看法。25名遗传咨询师完成了在线调查，20名还参加了半结构化电话采访。受访者回忆并描述了37起他们认为对患者和/或他们的家人有负面后果的具体事件。归纳和跨案例分析揭示了共同的主题，包括：不利的心理社会影响，不充分的遗传咨询，基因检测和筛查错误，医疗管理不善，对医疗提供者态度的负面转变，以及不必要的卫生保健资源使用。经常提到的预防/减轻负面结果的战略包括：针对医疗提供者和普通公众的教育宣传和提高认识计划，标准化的检测和筛查程序，以及实施报告和处理不良事件的机制。还讨论了其他发现、实践和政策影响，以及研究建议。
Anecdotal accounts suggest some patients have experienced negative outcomes as a result of receiving genetics services from non-genetics providers, but empirical evidence of these incidents and their outcomes is limited. This study examined genetic counselors' perceptions of the occurrence of such incidents in the state of Minnesota. Twenty-five genetic counselors completed an on-line survey and 20 also participated in a semi-structured telephone interview. The interviewees recalled and described 37 specific incidents they perceived as having negative outcomes for patients and/or their families. Inductive and cross-case analysis revealed common themes including: adverse psychosocial effects, inadequate genetic counseling, genetic testing and screening errors, medical mismanagement, negative shifts in attitudes toward medical providers, and unnecessary use of health care resources. Commonly mentioned strategies for preventing/mitigating negative outcomes included: educational outreach and awareness programs for medical providers and the general public, standardized testing and screening processes, and implementing mechanisms for reporting and addressing adverse events. Additional findings, practice and policy implications, and research recommendations are discussed.