Center for Genetic Medicine, Northwestern University, Chicago, IL, USA.
Hawai'i Community Genetics, Hawai'i Pacific Health, Honolulu, HI, USA.
J Genet Couns. 2021 Dec;30(6):1671-1682. doi: 10.1002/jgc4.1433. Epub 2021 Jun 6.
Genetic counselors have an important role in offering and appropriate coordinating abortion services for patients identified with a fetal abnormality. Few studies have been conducted to determine the effects of legislation on genetic counselors and patients. This study aimed to further our understanding of genetic counselors' perception of the impact of abortion regulations on their practice, the perceived financial and emotional impact on their patients and their ability to access abortion. A 22-question survey was developed based on themes identified by a qualitative study (Koenig et al., 2019, Journal of Genetic Counseling, 28, 790-801), and distributed to members of the National Society of Genetic Counselors; data from 113 respondents are analyzed. For analysis, participants were categorized into three groups based on the restrictiveness of their state's abortion legislation (supportive, middle ground, hostile) using the Guttmacher Institute's designation based on the amount of restrictive abortion legislation in their state. Participants reported that legislative gestational age restrictions significantly impact their counseling and coordinating of abortion services. Participants reported emotional and financial burdens that impact their patients seeking abortion; however, those in hostile states were significantly more likely to report a perceived financial or emotional impact on their patients. Participants in hostile states were more likely than those in supportive states to report that many of the addressed legislative and institutional regulations impact patients' ability to access abortion. Abortion regulations limiting the decision-making time frame for patients with a fetal abnormality have a significant impact on the practice of prenatal genetic counseling. Further restrictions may change how genetic counselors choose to counsel their patients about the option of abortion, but also may limit the availability of choices particularly for patients in rural areas, in hostile states, and those without the financial resources to travel or pursue termination at later gestational ages.
遗传咨询师在为诊断出胎儿异常的患者提供和适当协调堕胎服务方面发挥着重要作用。很少有研究来确定立法对遗传咨询师和患者的影响。本研究旨在进一步了解遗传咨询师对堕胎法规对其实践的影响的看法,对其患者的经济和情感影响的看法,以及他们获得堕胎的能力。根据一项定性研究(Koenig 等人,2019 年,《遗传咨询杂志》,28,790-801)确定的主题,开发了一份 22 个问题的调查问卷,并分发给全国遗传咨询师协会的成员;对 113 名受访者的数据进行了分析。为了进行分析,根据他们所在州的堕胎立法的严格程度,将参与者分为三组(支持、中立、敌对),使用 Guttmacher 研究所根据他们所在州的限制性堕胎立法数量进行的指定。参与者报告说,立法妊娠年龄限制极大地影响了他们的堕胎咨询和协调服务。参与者报告说,经济和情感负担影响了他们寻求堕胎的患者;然而,那些在敌对州的人更有可能报告对他们的患者有经济或情感上的影响。敌对州的参与者比支持州的参与者更有可能报告说,许多涉及的立法和机构法规影响了患者获得堕胎的能力。限制有胎儿异常的患者决策时间框架的堕胎法规对产前遗传咨询的实践有重大影响。进一步的限制可能会改变遗传咨询师选择如何为他们的患者提供堕胎选择的方式,但也可能会限制选择的可用性,特别是对农村地区、敌对州的患者,以及那些没有经济资源在后期妊娠阶段进行旅行或终止妊娠的患者。