Abstract

In 2013 both Saudi Arabia and Qatar launched genome projects with the aim of providing information for better diagnosis, treatment and prevention of diseases and, ultimately to realize personalized medicine by sequencing hundred thousands samples. These population based genome activities raise a series of relevant ethical, legal and social issues general, related to the specific population structure as well as to the Islamic perspective on genomic analysis and genetic testing. To contribute to the debate, the Authors after reviewing the existing literature and taking advantage of their professional experience in the field and in the geographic area, discuss and provide their opinions. In particular, the Authors focus on the impact of consanguinity on population structure and disease frequency in the Arab world, on genetic testing and genomic analysis (i.e. technical aspects, impact, etc.) and on their regulations. A comparison between the Islamic perspective and the ethical, social and legal issues raised in other population contexts is also carried. In conclusion, this opinion article with an up-to-date contribution to the discussion on the relevance and impact of genomic analysis and genetic testing in the Arab world, might help in producing specific national guidelines on genetic testing and genomic analysis and help accelerate the implementation and roll out of genome projects in Muslim countries and more specifically in Qatar, and other countries of the Gulf.

Highlights

  • In 2013 both Saudi Arabia and Qatar launched genome projects with the aim of providing information for better diagnosis, treatment and prevention of diseases and, to realize personalized medicine by sequencing hundred thousands samples

  • As a first measure China food and drug administration (CFDA) issued a ban on all medical applications of ‘gene sequencing technology products’ such as disease prevention and diagnosis, treatment and monitoring, health status assessment and genetic risk factor prediction

  • As regards to Qatar, quite recently the Shafallah Genetics Medical Centre has produced a formal operation manual that includes guidelines on genetic testing and release of information, stating that genetic data should not be given to insurance companies, employers, schools, or governments, except after obtaining the full informed consent of the person tested

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Summary

Introduction

In 2013 both Saudi Arabia and Qatar launched genome projects with the aim of providing information for better diagnosis, treatment and prevention of diseases and, to realize personalized medicine by sequencing hundred thousands samples. Researchers conducted a genome-wide linkage analysis in South India, where uncle-niece and first cousin marriages are largely favored, and failed to determine a single gene of major effect in a clinically heterogeneous sample of consanguineous cases [29].

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