Abstract
The success of the Saudi Human Genome Program (SHGP), one of the top ten genomic programs worldwide, is highly dependent on the Saudi population embracing the concept of participating in genetic testing. However, genetic data sharing and artificial intelligence (AI) in genomics are critical public issues in medical care and scientific research. The present study was aimed to examine the awareness, knowledge, and attitude of the Saudi society towards the SHGP, the sharing and privacy of genetic data resulting from the SHGP, and the role of AI in genetic data analysis and regulations. Results of a questionnaire survey with 804 respondents revealed moderate awareness and attitude towards the SHGP and minimal knowledge regarding its benefits and applications. Respondents demonstrated a low level of knowledge regarding the privacy of genetic data. A generally positive attitude was found towards the outcomes of the SHGP and genetic data sharing for medical and scientific research. The highest level of knowledge was detected regarding AI use in genetic data analysis and privacy regulation. We recommend that the SHGP’s regulators launch awareness campaigns and educational programs to increase and improve public awareness and knowledge regarding the SHGP’s benefits and applications. Furthermore, we propose a strategy for genetic data sharing which will facilitate genetic data sharing between institutions and advance Personalized Medicine in genetic diseases’ diagnosis and treatment.
Highlights
The success of the Saudi Human Genome Program (SHGP), one of the top ten genomic programs worldwide, is highly dependent on the Saudi population embracing the concept of participating in genetic testing
This study provides insights regarding the Saudi society’s awareness, knowledge, and attitude towards the SHGP, the sharing and privacy of genetic data resulting from the SHGP, and the role of artificial intelligence (AI) in managing privacy and analysing genetic data
We reported moderate awareness and attitude towards the SHGP and minimal knowledge regarding its benefits and applications
Summary
The success of the Saudi Human Genome Program (SHGP), one of the top ten genomic programs worldwide, is highly dependent on the Saudi population embracing the concept of participating in genetic testing. A generally positive attitude was found towards the outcomes of the SHGP and genetic data sharing for medical and scientific research. The goals of the SHGP are to build a genetic database for Saudi citizens, prevent and limit genetic diseases, enable researchers and scientists, to benefit from the genetic information in the program, and determine genetic variants and use them to develop diagnostic prevention tools, to reduce the incidence of genetic diseases and improve community well-being. 3,000 of these variants are novel causative mutations directly associated with over 1,230 rare genetic d isorders[17] These results will allow for the prediction of the potential occurrence and reoccurrence of some rare genetic syndromes, thereby advancing curative approaches by proposing suitable medication determined by the patient’s genetic makeup[8,17,18]
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