A New Era in Genetic Governance: The UAE’s New Genome Law

The United Arab Emirates (“UAE”) has recently issued a new law to regulate the use of the human genome, which is the complete genetic material of a living organism. The law aims to ensure the safe and ethical use of the human genome for various purposes, such as health, research, and legal matters, while protecting the rights and dignity of individuals and the public interest. The law also establishes a national genomic database and a genome programme to utilise the genomic data of the UAE citizens and develop the Emirati genome reference.

It introduces several significant changes, such as:

• Requiring consent or the consent of the legal representative for genomic screening or genetic screening on any person.
• Setting out the controls for taking, analysing, using, preserving and transporting the biological sample for genomic or genetic analysis or DNA profiling.
• Granting every person the right to withdraw from a voluntary genomic or genetic screening or scanning at any stage without providing justification for doing so, and the right to the results of their own analyses.
• Permitting genomic or genetic screening for pre-symptomatic prevention, diagnosis and treatment of diseases and health conditions within the public health framework.
• Allowing genetic screening at centres for medical support in reproduction, and of pregnant women, for identifying and preventing hereditary diseases and deformities.
• Imposing obligatory genomic screening of umbilical cord blood, newborns, and couples, for detecting hereditary traits and diseases, diagnosing injuries and diseases in newborns, and planning a healthy family.
• Prohibiting employers from subjecting job candidates or workers to any genomic screening or genetic screening outside of the framework of a voluntary health programme.
• Prohibiting insurance corporations from enforcing those seeking insurance coverage to any genomic screening or genetic screening, and from requesting or using the results of any previous genetic screening or genomic screening.
• Prohibiting genomic screening or genetic screening to be requested to detect symptoms or diagnose a specific disease for estimating damage and calculating and claiming compensation for it, except by a judicial order or ruling, and prohibiting DNA profiling to be performed to prove lineage and kinship, except based on an order or ruling from the competent court.
• Establishing a national genomic database in which genomic and genetic data and information shall be stored in the UAE.
• Establishing a genome programme that aims to use the genomic data of UAE citizens, analyse it and benefit from it to improve the public health of Emiratis, and a genome reference, which is the digital DNA sequence.
• Requiring that no facility may provide services related to human genomes and genes, except with a licence from the competent authorities, and that the facility may not advertise its services, except with a licence from the competent authorities.

While genomic technology holds immense potential for advancing human health, knowledge, and living standards, effective governance and legal frameworks are essential to ensure that the benefits of genomic technology are realized while minimizing its risks. The new law is a comprehensive and advanced legislation that reflects the UAE vision, and as the implementing resolutions come into place in 2024, we expect further innovation of the health sector as well as heightened protection of the rights of individuals in the UAE.

How can we help?

Al Tamimi & Company can assist and provide unparalleled expertise and guidance to individuals and organisations navigating the complex landscape of the UAE’s Genome Law. Should you have any questions or require further information, please do not hesitate to reach out to us.