Identifying the current status and future needs of clinical, educational, and laboratory genetics services in Pakistan: A web-based panel discussion

Authors

Myla Ashfaq, University of Texas, United States
Syed A. Ahmed, Kaiser Permanente, United States
Rabia Aziz-Rizvi, Special Needs Pakistan, Pakistan
Zahra Hasan, Aga Khan UniversityFollow
Salman Kirmani, Aga Khan UniversityFollow
Shama Munim, Jinnah Medical and Dental University, Pakistan
Rizwan Naeem, Albert Einstein College of Medicine, United States
Jamal Raza, National Institute of Child Health, Pakistan
Aisha Furqan, Natera, Inc., United States

Document Type

Article

Department

Paediatrics and Child Health; Pathology and Laboratory Medicine

Abstract

While the prevalence of genetic disorders has been well documented in the Muslim-majority, low-socioeconomic country of Pakistan, the provision of medical genetic services remains limited and cost-prohibitive to the masses in the country. With the objective of identifying gaps in the provision of medical genetics services as perceived by the healthcare providers and the general public, the Pakistani Society of Medical Genetics and Genomics (PSMG) organized a needs assessment webinar on December 6, 2020, titled, "A Vibrant Discussion on the Current Status and Future Needs of Medical Genetic Services in Pakistan." The objectives of the webinar were (1) to explore the current availability of medical genetics services, (2) to identify areas in clinical genetics delivery models needed to improve the state of medical genetics in the country, and (3) to garner the interest in such provisions from the expert and lay audience. The webinar consisted of a moderator-led, structured interview of an expert panel including the following topics: (1) postgraduate clinical genetics and genetic counseling training programs, (2) medical genetics clinics and formal genetic counseling services), (3) clinical genetic testing and (4) patient support and advocacy groups. The webinar was followed by a short, web-based survey completed by 35 of the 60 attendees. The results of this survey indicated overwhelming support for establishing formal genetic counseling educational opportunities (91.6%) and increasing the availability of genetic testing (100%). This report further summarizes the opinions and recommendations of the panelists and the audience survey results.

Comments

Volume and issue are not provided by the author/publisher

Publication (Name of Journal)

Journal of Community Genetics

Recommended Citation

Ashfaq, M., Ahmed, S. A., Aziz-Rizvi, R., Hasan, Z., Kirmani, S., Munim, S., Naeem, R., Raza, J., Furqan, A. (2022). Identifying the current status and future needs of clinical, educational, and laboratory genetics services in Pakistan: A web-based panel discussion. Journal of Community Genetics, 1-10.
Available at: https://ecommons.aku.edu/pakistan_fhs_mc_pathol_microbiol/1423