WHO releases new principles for ethical human genomic data collection and sharing

The World Health Organization (WHO) has issued a set of principles for the ethical collection, access, use and sharing of human genomic data. Created with guidance from the WHO Technical Advisory Group on Genomics (TAG-G) and other international experts, these principles establish a global approach to help protect individual rights, promote equity and foster responsible collaboration in genomic research.

Genomic technologies are advancing at a remarkable pace, offering unprecedented insights into health and disease – from cancers to rare genetic conditions. However, as genomic data use expands, so too do the ethical and logistical challenges surrounding privacy, equitable access and responsible data management.

“The potential of genomics to revolutionize health and disease understanding can only be realized if human genomic data are collected, accessed and shared responsibly,” says Dr  John Reeder, Director of WHO’s Research for Health Department. “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.”

The principles emphasize several core themes. Informed consent and privacy are foundational, with clear guidelines to ensure that individuals understand and agree to how their genomic data will be used. WHO underscores the importance of transparency, requiring that data collection processes are openly communicated and safeguarded against misuse.

Another core focus is equity. The principles call for targeted efforts to address disparities in genomic research, especially in low- and middle-income countries (LMICs), and for ensuring that genomic research benefits populations in all their diversity. By prioritizing the inclusion of underrepresented groups, the guidelines aim to promote broader and fairer representation in genomic research and its applications.

Recognizing the importance of international collaboration through partnerships across borders and sectors, WHO encourages collaborative efforts between governments, academia and the private sector to maximize the positive impact of genomic research. Responsible data sharing, supported by robust governance structures, is essential for advancing global health while respecting privacy.

WHO’s principles also address capacity building in regions with limited genomic infrastructure. By encouraging investment in local expertise and resources, the organization aims to close global disparities in research capacity, making genomic data practices more inclusive and sustainable.

The release of these principles represents a significant step forward in WHO’s mission to promote ethical genomics practices. As the field continues to evolve, these guidelines offer a trusted framework to support genomic research that is equitable, transparent and respectful of individual rights.