The World Health Organization (WHO) has issued a set of principles for the ethical collection, access, use and sharing of human genomic data to provide a global approach to protect individual rights, promote equity and foster responsible collaboration in genomic research.
The principles emphasise several key issues. Informed consent and privacy are fundamental, with clear guidelines to ensure that individuals understand and consent to how their genomic data will be used. WHO emphasizes the importance of transparency, requiring that data collection processes be openly communicated and protected from misuse.
Another key focus is equity. The principles call for targeted efforts to address disparities in genomic research, particularly in low- and middle-income countries (LMICs), and to ensure that genomic research benefits populations in all their diversity. By prioritising 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 governments, academia and the private sector to work together to maximize the positive impact of genomic research. Responsible data sharing, supported by robust governance structures, is essential to advancing global health while respecting privacy.