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WHO Sets New Global Guidelines For Genomic Research

WHO introduces ethical principles for genomic data use, emphasizing transparency, equity, and privacy.

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  • Nov 21, 2024

  • Simantini Singh Deo

WHO Sets New Global Guidelines For Genomic Research

The World Health Organization (WHO) has introduced a set of ethical principles for managing the collection, access, use, and sharing of human genomic data. Developed through the WHO Technical Advisory Group on Genomics (TAG-G) and in collaboration with international experts, these principles establish a common approach for helping safeguard individual rights, promote equity, and strengthen responsible collaboration in genomic research.

As genomic technologies rapidly advance, providing deeper insights into diseases like cancer and rare genetic disorders, challenges around privacy, equitable access, and responsible data use have also grown. WHO’s guidelines prioritise informed consent and confidentiality, ensuring individuals fully know and agree to how their genomic data will be utilised. Transparency is emphasised, requiring open communication about data collection processes and robust safeguards to prevent misuse.

Dr  John Reeder, Director of WHO’s Research for Health Department, said in a statement, "The potential of genomics to revolutionise health and disease understanding can only be realised if human genomic data are collected, accessed and shared responsibly. This document outlines globally applicable principles designed to guide ethical, legal and equitable use of human genome data, fostering public trust and protecting the rights of individuals and communities. It serves as a call to action, urging all stakeholders to adhere to these principles and ensure the benefits of genomic advancements are accessible to everyone."

Equity is another key focus. The principles advocate for reducing the decline in genomic research, particularly in low- and middle-income countries (LMICs), and ensuring that research benefits diverse populations by emphasising the inclusion of underrepresented groups. WHO aims to support genomic studies and their applications.

The guidelines also support the potential of international partnerships among governments, academia, and the private sector and their impact on genomic research. It is considered that the research if supported by well-built governance structures, is essential for improving and advancing global health while sustaining privacy and ethical standards.

WHO's principles also focus on building capacity in regions with poor resources and limited genomic infrastructure. Here, the organisation encourages investing in local expertise and resources to close gaps in research capacity worldwide. These will promote sustainable and inclusive research capacity globally.

With these principles, WHO is taking a significant step towards ethical guiding the future of genomic research. The framework emphasises equity, transparency, and respect for individual rights, providing a foundation for ethical genomics as the field continues to evolve.

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