Knoppers Terese, Haley Cassandra E, Patrinos Dimitri, Zawati Ma'n H
Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
J Genet Couns. 2025 Apr;34(2):e1960. doi: 10.1002/jgc4.1960. Epub 2024 Aug 20.
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.
在加拿大，随着遗传学在医疗实践中的日益融入和需求增加，遗传咨询领域正在迅速发展。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，并通过法律界定其角色和职责为咨询师提供支持。然而，需要进行实证性定性研究，以了解当前缺乏监管所带来的风险和挑战，从而为这些讨论提供参考。本文介绍了对魁北克省遗传咨询师及其专业医疗同事进行的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，所有参与者都出于不同原因支持监管。参与者的回答突出了与缺乏法律认可相关的法律、组织和结构方面的风险和挑战。首先，角色不明确给遗传咨询师的工作关系和公众认知带来了问题。其次，从业者的自主权差异很大，当咨询师拥有高度自主权或从事受控行为时，会增加责任风险和临床准备方面的风险。第三，缺乏认可最终加剧了提供和获得护理方面的结构压力。结果表明，法律认可通过提高公众意识、建立头衔保护和问责机制、明确专业范围以及减轻责任风险，有助于更安全、高效地提供遗传学服务。据我们所知，这是第一项将遗传学服务领域的实际利益相关者纳入关于遗传咨询缺乏监管讨论的定性研究。研究结果支持在魁北克继续寻求法律认可，并可为其他司法管辖区的类似举措提供参考。
