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一项针对提供遗传咨询服务的西班牙医疗保健专业人员所经历的伦理和职业挑战的调查。

A survey of ethical and professional challenges experienced by Spanish health-care professionals that provide genetic counseling services.

作者信息

Abad-Perotín Reyes, Asúnsolo-Del Barco Ángel, Silva-Mato Agustín

机构信息

Departamento de Ciencias Sanitarias y Medicosociales, Universidad de Alcalá, Alcalá de Henares, Madrid, Spain.

出版信息

J Genet Couns. 2012 Feb;21(1):85-100. doi: 10.1007/s10897-011-9382-9. Epub 2011 Jun 24.

Abstract

Genetic testing is increasingly applied for diagnosis and clinical treatment. In some countries, genetic counseling services are provided by professionals with specific training in this discipline, whereas other countries have no teaching programs and counseling is offered by physicians, nurses, pharmacists or biochemists. This counseling raises more and more ethical dilemmas for health professionals at their clinics. The purpose of this study was to analyze the characteristics of Spanish professionals devoted to providing genetic counseling services and to investigate the frequency of the ethical dilemmas they face. Results from 72 survey respondents revealed this counseling is provided by an almost even number of male and female professionals, mostly physicians with many years of professional experience. The overall frequency of the ethical dilemmas encountered was not high. The most frequent dilemmas corresponded to emotional responses by patients, informed consent, uncertainty about test results, and limitations on health-care resources. The frequency of dilemmas involving discrimination and provider directiveness was very low. Additional findings, practice implications, and research recommendations are presented.

摘要

基因检测在诊断和临床治疗中的应用日益广泛。在一些国家,基因咨询服务由接受过该学科专门培训的专业人员提供,而在其他国家则没有相关教学项目,咨询工作由医生、护士、药剂师或生物化学家进行。这种咨询给临床的健康专业人员带来了越来越多的伦理困境。本研究的目的是分析致力于提供基因咨询服务的西班牙专业人员的特点,并调查他们面临伦理困境的频率。72名受访者的调查结果显示,提供这种咨询服务的专业人员中男性和女性数量几乎相等,大多数是有多年专业经验的医生。遇到的伦理困境总体频率不高。最常见的困境是患者的情绪反应、知情同意、检测结果的不确定性以及医疗资源的限制。涉及歧视和提供者指令的困境频率非常低。文中还给出了其他研究结果、实践启示和研究建议。

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