工作场所的好处还是坏处? 对遗传咨询师对工作场所遗传检测的看法和经验进行定性研究
Elizabeth Charnysh1, Katherine Hendy2, Kerry Ryan3
1The Jackson Laboratory for Genomic Medicine, Farmington, Connecticut, USA.
Journal of genetic counseling
|April 30, 2025
概括
工作场所遗传检测提供了健康益处,但需要仔细的遗传咨询. 专家强调教育和保护措施,以最大限度地提高优势,并最大限度地降低差距和痛苦等风险.
科学领域:
- 基因组学和遗传咨询 基因组学和遗传咨询
- 基因组学的伦理,法律和社会影响 (ELSI)
- 职业健康与福祉工作
背景情况:
- 雇主越来越多地提供基因测试作为健康福利,包括癌症,心血管和药物遗传风险.
- 这一趋势需要更深入地了解在工作场所背景下对遗传咨询的独特考虑.
研究的目的:
- 质量评估参与工作场所遗传测试 (wGT) 的遗传咨询师 (GC) 的观点和经验.
- 从实践GC的角度探讨wGT的伦理,法律和社会影响 (ELSI).
主要方法:
- 半结构面试与18名美国总部的GC进行了半结构面试.
- 参与者要么有WGT行业的直接经验 (角色导向),要么提供测试后咨询 (患者导向).
- 数据分析采用编码书主题分析,并对成绩单进行双重编码.
主要成果:
- 角色导向和患者导向的GC都承认wGT有潜力改善获得遗传服务和健康结果的机会.
- 面向患者的医疗顾问对随访护理的准入和医疗保健差异表示更大的担忧.
- 角色指导的GC更具支持性,而这两组都强调需要强有力的测试前和测试后教育,以减轻痛苦和遗憾等伤害.
结论:
- 遗传咨询师强调,需要为职场遗传检测提供全面的教育和支持系统.
- 全球会议对wGT的洞察力可以为更广泛的人口基因组查计划的ELSI考虑提供信息.
- 需要制定战略,以平衡扩大基因测试准入与减轻潜在风险和差异.
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