Preparing Genetic Counselors for Advocacy Partnerships: A Novel Internship Model.

چکیده اصلی

Patient advocacy organizations (PAOs) and genetic counseling have expanded in tandem with the growth of precision medicine. Genetic counseling and PAOs share important goals related to advancing genomic medicine, creating novel possibilities for synergistic collaboration, especially as the sheer number of PAOs focused on genetic conditions presents new options for genetic counselor education. While patient advocacy has long been part of genetic counseling education, there are few published reports or studies focused on how advocacy is incorporated into genetic counseling graduate training. Accordingly, the University of Pennsylvania Master of Science in Genetic Counseling Program and the University of Pennsylvania Orphan Disease Center's JumpStart Program collaborated to launch an experiential service-learning opportunity wherein genetic counseling trainees partner with a disease-specific advocacy group over the course of a 10-week advocacy internship. Here, we describe our evolving efforts to incorporate an advocacy internship in our graduate curriculum, culminating in the development of The Genetic Counseling Student Exchange (GCSX) program. We share the curricular format, planning and staff workflow, as well as examples of internship project deliverables. We also reflect on the internship from varying perspectives, highlighting our experiences and feedback from different stakeholders. In closing, we consider how the GCSX may be a key step towards incorporating more disability education into our genetic counseling training program while calling for future research on GCSX to measure its impact and to determine how best to tailor disability education around the internship experience. Overall, we hope that detailing the GCSX inspires other GC programs to consider adapting aspects of the educational framework that we have developed to expand advocacy training across genetic counseling programs.

ترجمه فارسی چکیده

سازمان‌های دفاعی بیماران (PAO) و مشاوره ژنتیک در کنار هم با رشد پزشکی دقیق رشد کرده‌اند. این دو حوزه اهداف مشترکی در زمینه پیشبرد پزشک ژنومیک دارند و فرصت‌هایی برای همکاری هم‌افزا ایجاد می‌کنند. دانشگاه پنسیلوانیا و مرکز بیماری‌های نادر آن، برنامه «پرش» را برای ایجاد فرصتی یادگیری خدمت تجربی همکاری کردند که در آن دانشجویان مشاوره ژنتیک به مدت ۱۰ هفته با یک گروه دفاعی اختصاصی بیماری همکاری می‌کنند. این مقاله فرمت برنامه درسی، برنامه‌ریزی و جریان کار، و نمونه‌ای از پروژه‌های تحویل‌شده را توصیف می‌کند و تجربیات و بازخوردهای ذینفعان را بررسی می‌کند.

متن کامل اصلی