Stakeholder experiences and perspectives of genetic and genomic screening procedures in the Gulf Cooperation Council (GCC) region: a qualitative exploration

With swift progress in innovative fields like genetics and genomics, the application of genetic and genomic technologies in medicine has surged to unparallel heights, extending into domains traditionally beyond the scope of medical applications such as marriage. This phenomenon, known as geneticization, raises complex ethical, legal, and social implications. This study examines the social implications of geneticization in the Gulf Cooperation Council (GCC) countries, where premarital screening (PMS) is mandatory, and large-scale genome programs using Whole Genome Sequencing (WGS) have been underway for several years. Twenty-seven semi-structured, in-depth interviews were conducted with two stakeholder groups: Nine with professionals overseeing genetic and genomic initiatives and eighteen with participants of the PMS procedure. Key themes emerging from professional perspectives included child rights in genetic testing, awareness and knowledge gaps among public as well as professionals involved in counselling, stigmatization of the genetic disorders, and the future of genomics in the region. Insights from PMS participants highlighted the procedure’s impact on individual lives, concerns over privacy and confidentiality, the mandatory nature of the screening procedure, future reproductive plans for at-risk couples, and suggestions for the improvement of the PMS program. The findings offer valuable insights for improving the design and implementation of genetic and genomic screening programs in the region. Collaboration among policymakers, healthcare professionals, and the public is essential to address these challenges and enhance program effectiveness.