Booke Stephanie, Austin Jehannine, Calderwood Laurel, Campion MaryAnn
Department of Genetics, Stanford University School of Medicine, Stanford, CA, USA.
Departments of Psychiatry and Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
J Genet Couns. 2020 Feb;29(1):25-34. doi: 10.1002/jgc4.1176. Epub 2019 Nov 7.
Despite the high demand for psychiatric genetic counseling among people with psychiatric conditions (>90%), surveys show that genetic counselors rarely receive primary referrals for psychiatric cases. The purpose of this study was to further investigate potential barriers to the provision of psychiatric genetic counseling services, focusing specifically on the prevalence and impact of psychiatric stigmatization among genetic counselors. Board-certified, practicing genetic counselors were invited to participate in an anonymous survey via the National Society of Genetic Counselors. Survey measures included a validated psychiatric stigmatization scale (OMS-HC) and questions assaying genetic counselors' experiences with and opinions of psychiatric genetic counseling. Associations between psychiatric stigmatization and attitudes toward and practice related to psychiatric genetic counseling were computed using Pearson's correlation. The majority of respondents believed that psychiatric genetic counseling is of value to families (94%) and that it is indicated if there is a relevant personal or family history (90.3%), but only 44.6% reported providing this service. On average, respondents scored neutrally on psychiatric stigma scales; however, higher stigma levels were associated with less frequent psychiatric discussions (p = .05), less counselor comfort and perceived qualification (p = .003) and perceptions of having insufficient psychiatric genetic data (p < .02), resources (p < .02) and time (p < .03). This study suggests that the limits of psychiatric genetics research and unavailability of genetic testing lead many genetic counselors to doubt the utility of psychiatric genetic counseling. Should this mindset persist, without the intervention of psychiatric education and training, the field of genetic counseling risks continuing to inadequately serve a historically underserved population.
尽管患有精神疾病的人群对精神科遗传咨询的需求很高(>90%),但调查显示,遗传咨询师很少收到精神科病例的初次转诊。本研究的目的是进一步调查提供精神科遗传咨询服务的潜在障碍,特别关注遗传咨询师中精神污名化的患病率及其影响。通过美国国家遗传咨询师协会邀请获得委员会认证的执业遗传咨询师参与一项匿名调查。调查措施包括一个经过验证的精神污名化量表(OMS-HC)以及评估遗传咨询师在精神科遗传咨询方面的经历和看法的问题。使用Pearson相关性计算精神污名化与对精神科遗传咨询的态度及相关实践之间的关联。大多数受访者认为精神科遗传咨询对家庭有价值(94%),并且如果有相关的个人或家族病史就有必要进行(90.3%),但只有44.6%的受访者报告提供这项服务。平均而言,受访者在精神污名量表上的得分呈中性;然而,较高的污名水平与较少的精神科讨论频率相关(p = 0.05),咨询师的舒适度和自我认知的资质较低(p = 0.003),以及认为缺乏足够的精神科遗传数据(p < 0.02)、资源(p < 0.02)和时间(p < 0.03)。这项研究表明,精神科遗传学研究的局限性和基因检测的不可用导致许多遗传咨询师怀疑精神科遗传咨询的效用。如果这种思维模式持续存在,在没有精神科教育和培训干预的情况下,遗传咨询领域可能会继续无法充分服务于历史上未得到充分服务的人群。