Grieve LilyAnne M, Murthy Vinaya S
Department of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, Indiana, USA.
J Genet Couns. 2023 Dec;32(6):1232-1237. doi: 10.1002/jgc4.1799. Epub 2023 Sep 26.
Recruiting racially and ethnically underrepresented participants into genetics research studies has been challenging. While many institutions have taken steps to address the inequity in genetics research, genetic counseling training programs have the chance to inspire students to engage with underrepresented communities through utilizing different research methodologies. These methodologies can help students focus on research projects that increase access to genetics services and improve clinical care. Community-engaged research (CER) presents a pedagogical approach to enhance service-learning opportunities for students. Furthermore, it allows students to develop practical research skills for doing research with the community, rather than on the community. CER is a collaborative community-academic partnership that leads to mutual benefit and outcomes such as inclusion and engagement of the community in research, building trust and relationships, and increasing cultural awareness and exposure. In addition, CER can be used to address research and healthcare inequities by providing opportunities for genetics professionals and trainees to work closely with underrepresented populations. We aim to highlight the opportunities CER provides to students, mentors, and faculty within the context of graduate research in genetic counseling training from the experiences of a student and an educator. In addition, we hope to emphasize the necessity for projects like these to address the gaps in participation of underrepresented patient populations in research and identify areas that are mutually beneficial to improve health outcomes, patient care experiences, access, and service delivery. This reflective essay illustrates the completion of a CER project that was developed in collaboration with community members to address gaps in clinical genetics services in Indigenous healthcare.
招募种族和族裔代表性不足的参与者参与基因研究一直具有挑战性。虽然许多机构已采取措施解决基因研究中的不平等问题，但遗传咨询培训项目有机会通过采用不同的研究方法，激励学生与代表性不足的社区进行接触。这些方法可以帮助学生专注于那些能增加基因服务可及性并改善临床护理的研究项目。社区参与研究（Community-engaged research，CER）提供了一种教学方法，以增强学生的服务学习机会。此外，它还能让学生培养与社区合作开展研究（而非针对社区进行研究）的实践研究技能。CER是一种社区与学术的合作关系，能带来互利共赢以及诸如社区参与研究、建立信任和关系、提高文化意识和接触度等成果。此外，通过为基因专业人员和受训人员提供与代表性不足的人群密切合作的机会，CER可用于解决研究和医疗保健方面的不平等问题。我们旨在从一名学生和一名教育工作者的经历出发，突出CER在遗传咨询培训研究生研究背景下为学生、导师和教师提供的机会。此外，我们希望强调此类项目对于解决代表性不足的患者群体在研究参与方面的差距以及确定对改善健康结果、患者护理体验、可及性和服务提供有互利作用的领域的必要性。这篇反思性文章阐述了一个与社区成员合作开展的CER项目的完成情况，该项目旨在解决原住民医疗保健中临床基因服务的差距。
