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Gene$c Counseling Training: The Philippines’ Experience
Mercy Laurino, MS CGC PhD Licensed Gene6c Counselor
May 19, 2016
Background- The Philippines
• Lower-‐ -‐middle income country in Asia • Popula$on: 98.39 Million (World Bank, 2013)
Vital Sta$s$cs: • Birth rate: 19.7 per 1,000 mid-‐year popula$on • Maternal Mortality Ra$o: 230 per 100,000
livebirths • Neonatal mortality rate: 15 per 1,000 livebirths • Infant mortality rate: 25 per 1,000 livebirths • Under-‐5 mortality rate: 34 per 1,000 livebirths
Cultural Diversity • 175 ethnolinguis$c groups located in 7,107
islands
Current Status of Genetic Counseling
Source: Newborn Screening Reference Center
• Gene$cist to popula$on ra$o: 1: 11,750,000
• Increasing demand of gene$c counseling services:
• Expansion of the Philippine Newborn Screening Program
• Birth Defects Surveillance Project • Telegene$cs Referral System • Philippine Genome Center
• Increasing public awareness of gene$cs and gene$c contribu$ons to disease
• 2009 – curriculum development
• January 27, 2011 -‐
proposed curriculum approved by the University of the Philippines Manila Board of Regents during its 1266th mee$ng L-‐R: Dr. Conchita Abarquez, Dr. Barbara Cavan, Ms. Mercy Laurino, and Dr. Carmencita
Padilla. Photo Courtesy: Rommel Salles, MD.
MSGC Program
Genetic Counseling Training
• The MS Gene$c Counseling program was ins$tuted at the University of the Philippines Manila in 2011
• Curriculum was specific to the needs
of the Philippine popula$on and the health care delivery system
• There is emphasis on the vital role of
gene$c counselors in the public health sebng
Courses in the MS GC Program
G201-‐ Principles of Human Gene$cs G202-‐ Public Health Gene$cs GC201-‐ Principles of Gene$c Counseling GC202-‐ Psychosocial Aspects of Gene$c Counseling GC203-‐ Applied Gene$c Counseling GC204-‐ Gene$c Counseling in the Hospital Sebng GC205-‐Gene$c Counseling in the Community Sebng GC207-‐Seminars in Gene$c Counseling HPEd 261-‐ Organiza$on and Management of Programs Biosta$s$cs 201-‐ Introduc$on to Biosta$s$cs Epidemiology 201-‐ Introduc$on to Epidemiology Biosta$s$cs 206-‐ Research Methods GC300-‐ Master’s Thesis
Advocacy and student recruitment
School Number of ABendees
Ifugao State University 140
Saint Louis University 500
University of the Philippines Manila
40
Cebu Normal University 250
University of San Carlos 700
University of the Philippines Diliman
100
Silliman University 40
West Visayas State University
100
Liceo de Cagayan University
60
Central Mindanao University
400
TOTAL
2320 plus 2012 Lecture Series
Genetic Counseling Training Clinical Rota$on Sites: • Philippine General Hospital
(Metabolic, Dysmorphology, Cancer, Prenatal, in-‐pa$ent); Community Rota$on Sites in Newborn Screening Center Visayas and Mindanao
• UP Manila-‐ Stanford Gene$c Counseling Program collabora$on
Opportunities for Genetic Counselors
Placement for Gene$c Counselors: a. Newborn Screening Centers b. Newborn screening con$nuity clinics c. Specialty clinics in both government
and private hospitals
NBS Continuity Clinics in active operation -
2015
14 Con$nuity Clinics in opera$on
28 pioneer gene$c counseling students from: Batangas (1), Cotabato (1), Davao (1), Isabela (1), Zamboanga (1), General Santos (2), Bukidnon (2), Eastern Samar (1), Negros Oriental (1),
Cagayan de Oro (1), Surigao del Norte (1), Ifugao (1), Pampanga (2), Laguna (3), Tuguegarao (2), Quezon City (2) and Manila (6)
Eva Dimog, Ifugao Chris6an Leandro Monieno, Pampanga
Abegail Jayne Amoranto, Laguna Maris Hazel Cura, Laguna
Ramonito Nuique, Negros Oriental
Danalyn Echem, Zamboanga Del Sur Isidro Lauron, Bukidnon Graciel Mae Canoy, General Santos Starlene Joy Plaga, General Santos Mark Lenon Tulisana, Surigao City
DOST Scholars 2013-2014
Gene$c Services: Gene$c Counselors
MSGC Students
Two Graduates
– Melissa Baluyot, MD MSc Thesis Title: Lived Experiences of Parents of Children with G6PD Deficiency in the Philippines – Impact on Gene$c Counseling
– Peter James Abad, RN MSc Thesis Title: Communica$on of Gene$c Informa$on Among Filipino Families Affected with Congenital Adrenal Hyperplasia
Angela Villa, RN Thesis Title: Filipino Family Func$oning when a Child is diagnosed with Down Syndrome: Implica$ons on Gene$c Counseling
Ma-‐Am Tumulak, MD Thesis Title: Living with a Child with Maple Syrup Urine Disease: Psychosocial Issues, Parent Coping Strategies and its Implica$ons on Gene$c Counseling
Romer Guerbo, RN Thesis Title: Pioneering Gene$c Counseling in Philippines: A Study on Health Care Professional’s knowledge and Perspec$ve in Counseling
Eva Dimog, BS Thesis Title: Beliefs of Women in the Cordillera Administra$ve Region Admijed at Baguio General Hospital and Medical Center Regarding the Cause of Birth Defects
Thesis Comple$on
GC 204 2014 course
GC 202 2015 course GC Thesis Group
Publica$ons Abad, Peter James B. Explanatory models of illness may facilitate cultural competence in geneBc counseling. Journal of gene$c counseling 21.4 (2012): 612-‐614. Abad, P. J. B., Tan, M. L., Baluyot, M. M. P., Villa, A. Q., Talapian, G. L., Reyes, M. E., ... & Laurino, M. Y. (2014). Cultural beliefs on disease causaBon in the Philippines: challenge and implicaBons in geneBc counseling. Journal of community gene$cs, 5(4), 399-‐407. Cura, Jonathan Diego. RespecBng Autonomous Decision Making Among Filipinos: A Re-‐emphasis in GeneBc Counseling. Journal of gene$c counseling 24.2 (2015): 213-‐224.
Challenges for Genetic Counselors
• Full integra$on of gene$c counseling services in the Philippine health care delivery system given the various social, economic, and poli$cal determinants of health
• Incorpora$on of gene$c counseling services in other specialty areas (e.g., cardiology, neurology)
• Prac$ce of gene$c counseling in a culturally diverse sebng
Future Directions
• Establishment of the Philippine Na$onal Society of Gene$c Counselors
• Publica$on of gene$c counseling prac$ce guidelines to address bioethical, religious, and sociocultural needs of Filipino pa$ents, their families, and the na$on
• Promotes collabora$on and provides a network for professional communica$on and development among gene$c counselors prac$cing in Asia
• Advances the professional interests of gene$c counselors through quality gene$c counseling training programs, collabora$ve research and regular con$nuing educa$on programs offered at the regional, na$onal and interna$onal levels.
• Strives to promote equal access to gene$c counseling services regardless of socioeconomic status while being cognizant of the varying social, cultural, religious and health care systems in the region
The PSGCA's Objec6ves: • Expand access and delivery of quality gene$c counseling services in Asia;
• Foster partnership among Asian countries for gene$c counseling student didac$c training, clinical rota$on opportuni$es and ensuring quality training programs by maintaining minimum standards;
• Promote gene$c counseling research; • Par$cipate in policy development; and, • Ensure professional development and con$nuing educa$on opportuni$es for gene$c counselors prac$cing in Asia.
The Philippine Delegates for the Main Conference – Dr. Carmencita David Padilla (UP Manila Chancellor and Gene$cist) together with her team of Medical Gene$cists, Gene$c Counselor, and MS Gene$c Counseling students.
The Philippine Delegates for the Pre-‐Conference Workshop for Gene$c Counseling – Medical Gene$cists, Gene$c Counselor, and MS Gene$c Counseling students.
Officers pro tempore of the newly launched Professional Society of Gene$c Counselors
in Asia, a special interest society of the Asia-‐Pacific Society of Human Gene$cs.
Country Speaker Representa$ves:
Philippines Hong Kong Malaysia Singapore India Taiwan Thailand Vietnam Indonesia Australia
Pre-‐Conference Workshop for Gene$c Counselors
NSGC Interna$onal Grant Proposal
Survey of the Profile and Func6onal Roles of Gene6c Counselors in Asia
Peter James B. Abad, RN, MSc
Mercy Y. Laurino, MSc, LCGC (NSGC Member)
Professional GeneBc Counselor Society in Asia
As future Gene$c counselors of this country, we have to remember that it is through conversa6on that we'll find meaning about a par6cular situa6on. In doing so, it’s where we realize the difference we are making with these families. This is indeed the heart of gene$c counseling, not purely the detailed review of chromosomes and recurrence risks and features, but the rela6onship between human beings and the discussion of what it means to be human amidst of cultural medley. -‐ Philippine MSGC students
Acknowledgments
UP Manila – Ins6tute of Human Gene6cs Faculty Carmencita Padilla, MD Eva Cu6ongco-‐de la Paz, MD Catherine Lynn Silao, MD PhD Mary Anne Chiong, MD Melanie Liberty Alcausin, MD Sylvia Estrada, MD Jose Nevado, MD PhD Conchita Abarquez, MD Barbra Cavan, MD April Berboso, MD Mary Ann Abacan, MD Ins6tute of Human Gene6cs Staff DOST BSP PCHRD Pa6ents at the Philippine General Hospital Newborn Screening Reference Center for the data on the incidence of newborn screening disorders in the Philippines and the data on the NBS Con$nuity Clinics Peter James Abad, BSN RN MSGC – slide content
