"保护公众、更好地利用资源和更清晰的界限":就魁北克省监管的必要性采访遗传咨询师及其同事。

IF 1.9 4区 医学 Q3 GENETICS & HEREDITY Journal of Genetic Counseling Pub Date : 2024-08-20 DOI:10.1002/jgc4.1960
Terese Knoppers, Cassandra E Haley, Dimitri Patrinos, Ma'n H Zawati
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引用次数: 0

摘要

在加拿大,随着遗传学与医疗实践的日益融合和需求的不断增加,遗传咨询领域也在迅速发展。与此同时,越来越多的文献主张对遗传咨询进行监管,因为法律认可可以保护患者免受潜在的伤害风险,并通过法律界定咨询师的角色和职责为其提供支持。然而,对于目前缺乏监管所带来的风险和挑战,还需要进行实证定性研究,以便为这些讨论提供信息。本文介绍了对魁北克省遗传咨询师及其专业医疗同行进行的 23 次访谈的结果。通过跨学科的社会科学和法律内容分析确定了主题。值得注意的是,所有参与者都赞成监管,但理由各不相同。参与者的回答强调了与缺乏法律认可相关的法律、组织和结构风险与挑战。首先,角色不明确给遗传咨询师的工作关系和公众认可带来了问题。其次,从业人员的自主性差异很大,当咨询师具有高度自主性或实施受控行为时,就会产生责任风险和临床准备风险。第三,缺乏认可最终会加剧提供和获取医疗服务的结构性压力。研究结果表明,法律承认可以提高公众意识、建立产权保护和问责机制、明确专业范围并降低责任风险,从而促进遗传学服务更安全、更高效地提供。据我们所知,这是第一项将遗传学服务领域的从业利益相关者召集起来讨论遗传咨询缺乏监管问题的定性研究。研究结果支持魁北克继续寻求法律认可,并可为其他司法管辖区的类似倡议提供参考。
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"Protection for the public, better use of resources and clearer lines": Interviews with genetic counselors and their colleagues on the need for regulation in Quebec.

In Canada, the field of genetic counseling is rapidly evolving alongside the increasing integration of and demand for genetics in healthcare practice. In tandem, there is a growing body of literature advocating for the regulation of genetic counseling, as legal recognition can protect patients from potential risk of harm and provide counselors with support by legally defining their roles and duties. However, there is a need for empirical qualitative research regarding the risks and challenges associated with the current lack of regulation to help inform these discussions. This article presents findings from 23 interviews with genetic counselors and their professional healthcare colleagues in Quebec. Themes were identified via interdisciplinary social scientific and legal content analysis. Notably, all participants were in favor of regulation, for varied reasons. Participant responses highlighted legal, organizational, and structural risks and challenges associated with the lack of legal recognition. First, the lack of role clarity creates issues with genetic counselors' working relationships and public recognition. Second, the autonomy of practitioners varies significantly, raising risks of liability and clinical preparedness when counselors have high autonomy or perform controlled acts. Third, the lack of recognition ultimately exacerbates structural strains on delivery and access to care. Results indicate that legal recognition stands to foster safer and more efficient provision of genetics services by increasing public awareness, instituting title protection and accountability mechanisms, clarifying professional scope, and mitigating liability risks. To the best of our knowledge, this is the first qualitative study to bring practicing stakeholders from across genetics services to the discussion on the lack of regulation of genetic counseling. Findings support the continued pursuit of legal recognition in Quebec and can inform similar initiatives in other jurisdictions.

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来源期刊
Journal of Genetic Counseling
Journal of Genetic Counseling GENETICS & HEREDITY-
CiteScore
3.80
自引率
26.30%
发文量
113
审稿时长
6 months
期刊介绍: The Journal of Genetic Counseling (JOGC), published for the National Society of Genetic Counselors, is a timely, international forum addressing all aspects of the discipline and practice of genetic counseling. The journal focuses on the critical questions and problems that arise at the interface between rapidly advancing technological developments and the concerns of individuals and communities at genetic risk. The publication provides genetic counselors, other clinicians and health educators, laboratory geneticists, bioethicists, legal scholars, social scientists, and other researchers with a premier resource on genetic counseling topics in national, international, and cross-national contexts.
期刊最新文献
The current landscape of clinical exome and genome reanalysis in the U.S. A cross-sectional survey-based exploration of diversity in the admissions committees and student cohorts of genetic counseling programs over time. An analysis of direct-to-consumer genetic testing portals and their communication of health risk and test limitations. Patient perceptions of genetic counselors' role and emotional support needs in adults with Parkinson's disease Clinical genetic counselors' use of people‐ and identity‐first language in regard to patients' identification with disability
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