Insight

Raffaella Casolino: An important milestone in the WHO’s Genomics Programme

Raffaella Casolino/LinkedIn

Nov 22, 2024, 20:44

Raffaella Casolino: An important milestone in the WHO’s Genomics Programme

Raffaella Casolino, Technical Officer at the

“An important milestone in the World Health Organization’s Genomics Programme has just been launched!

Grateful to the many experts who contributed to this impactful document and to Anna Laura Ross for her exceptional leadership in driving this effort. It has been a privilege to represent the WHO NCD Department in this endeavor.

We are ready to advance the next steps toward improving the global implementation of genomics for health across diverse disease areas, including cancer. Stay tuned for what’s ahead!”

Quoting Anna Laura Ross’ post:

“The World Health Organization’s Genomics Programme has officially launched the new principles for ethical human genome data collection, access, use, and sharing!

These guidelines set a global standard for responsible genomic data practices, developed with input from the WHO Technical Advisory Group on Genomics (TAG-G) and international experts. As genomic technologies continue to advance, it’s crucial to have a robust framework to:

Ensure Informed Consent and Privacy
Protect individual rights by promoting transparency and clear communication about data use.
Promote Equity and Inclusivity
Address disparities in genomic research and ensure fair representation of diverse populations, especially from low- and middle-income countries (LMICs).
Foster Global Collaboration
Encourage partnerships across borders and sectors to maximize the benefits of genomic data sharing, while upholding strict standards for privacy and security.
Support Capacity Building
Strengthen local infrastructure and enhance genomic literacy to make genomic data practices more inclusive and sustainable worldwide.

These principles aim to guide researchers, policymakers, and healthcare providers in aligning their practices with WHO’s commitment to ethical genomics. The document provides actionable recommendations to address the key ethical, social, and legal challenges in the field.

Ready to dive in? Download the full document here.

Stay tuned for an upcoming webinar to learn more about these new guidelines and how they can be applied in practice.”

Raffaella Casolino