Genetic Counseling Services and Development of Training Programs in Malaysia

Genetic counseling service is urgently required in developing countries. In Malaysia, the first medical genetic service was introduced in 1994 at one of the main teaching hospitals in Kuala Lumpur. Two decades later, the medical genetic services have improved with the availability of genetic counseling, genetic testing and diagnosis, for both paediatric conditions and adult-onset inherited conditions, at four main centers of medical genetic services in Malaysia. Prenatal diagnosis services and assisted reproductive technologies are available at tertiary centres and private medical facilities. Positive developments include governmental recognition of Clinical Genetics as a subspecialty, increased funding for genetics services, development of medical ethics guidelines, and establishment of support groups. However, the country lacked qualified genetic counselors. Proposals were presented to policy-makers to develop genetic counseling courses. Challenges encountered included limited resources and public awareness, ethical dilemmas such as religious and social issues and inadequate genetic health professionals especially genetic counselors.     

Genetic Counseling/Consultation in South-East Asia: A Report from the Workshop at the 10th Asia Pacific Conference on Human Genetics

This paper reports on the workshop ‘Genetic Counseling/Consultations in South-East Asia’ at the 10^th Asia Pacific Conference on Human Genetics in Kuala Lumpur, Malaysia, in December 2012. The workshop brought together professionals and language/communication scholars from South-East Asia, and the UK. The workshop aimed at addressing culture- and context-specific genetic counseling/consultation practices in South-East Asia. As a way of contextualizing genetic counseling/consultation in South-East Asia, we first offer an overview of communication-oriented research generally, drawing attention to consultation and counseling as part of a communicative continuum with distinctive interactional features. We then provide examples of genetic counseling/consultation research in Hong Kong. As other countries in South-East Asia have not yet embarked on communication-oriented empirical research, we report on the current practices of genetic counseling/consultation in these countries in order to identify similarities and differences as well as key obstacles that could be addressed through future research. Three issues emerged as ‘problematic’: language, religion and culture. We suggest that communication-oriented research can provide a starting point for evidence-based reflections on how to incorporate a counseling mentality in genetic consultation. To conclude, we discuss the need for creating a platform for targeted training of genetic counselors based on communication-oriented research findings.     

Illness perceptions in dialysis patients and their association with quality of life

The present study explored illness perceptions of end stage renal disease (ESRD) patients on both haemodialysis (HD) and peritoneal dialysis (PD) treatment, and their associations with quality of life. Leventhal's self-regulation model (SRM) was used as a theoretical framework. Illness perceptions and quality of life were assessed with the IPQ-R and the SF-36 in 91 HD and 42 PD patients participating in the NECOSAD-study. Compared to HD patients, PD patients experienced more personal control and had a better understanding of the illness. Illness perceptions explained from 17 to 51% of the variance in quality of life scores. Perception of more symptoms, more consequences and lower personal control were associated with lower well-being. The concept of illness perceptions is useful in understanding the impact of ESRD and of dialysis treatment on quality of life. Interventions aimed at providing more knowledge about ESRD and dialysis, and provision of skills to coping with the illness and its consequences may improve quality of life in dialysis patients.