Data democracy: WHO bats for passing on genomics tech to developing world

What is WHO Science Council?

• Established in April 2021 by WHO Director. It is composed of 9 leading scientists and public health experts from around the world.
• The council advises the Director on high-priority issues and advances in science and technology that could directly improve global health.
• It identified genomics as the focus of its first study, given the significant implications for public health.

TOOLS:

There are several tools to make genomic technologies more affordable:

• Tiered pricing: A tiered pricing model refers to the cost of goods going down — or discounts increasing — based on the quantity purchased.
• Sharing of intellectual property rights for low-cost versions
• Cross-subsidisation, whereby profits in one area are used to fund another etc.

What is Genomics?

• Genomics is an interdisciplinary field of biology focusing on the structure, function, evolution, mapping, and editing of genomes.
• Genomics uses a combination of recombinant DNA, DNA sequencing methods, and bioinformatics to sequence, assemble, and analyse the structure and function of genomes. 
• It differs from ‘classical genetics’ in that it considers an organism’s full complement of hereditary material, rather than one gene or one gene product at a time. 
• All living things, from single-celled bacteria, to multi-cellular plants, animals and humans, have a genome – and ours is made up of DNA.
• Frederick Sanger- 'the father of genomics'

RECOMMENDATIONS OF REPORT

HOW WHO CAN CONTRIBUTE

Promote the adoption or expanded use of genomics in all Member States through advocacy by many parties.

WHO should use its leadership role in global public health to advocate for the expanded use of genomics in its Member States.

WHO should promote affordable access to genomic technology globally so that all Member States, especially Low and Middle-Income Countries (LMICs), can adopt and expand the use of genomics for better health and other benefits.

Identify and overcome the practical issues that impede the implementation of genomics through local planning, financing, training of essential personnel, and the provision of instruments, materials, and computational infrastructure.

WHO should provide guidance to Member States on best practices for implementation of national or regional genomic programmes.

Member States should establish national programmes for building or expanding genomic capabilities or join a regional programme.

Foster commitments to collaborative activities to promote all aspects of national and regional programmes that advance genomics in the Member States.

WHO should promote international collaborations on genomics by strengthening effective existing collaborative arrangements and by helping form new ones for specific needs.

Industry, academia, and civil society should collaborate on the use of genomics to help solve important health problems, especially those prevalent in LMICs.

Promote ethical, legal, and equitable use and responsible sharing of information obtained with genomic methods through effective oversight and national and international rules and standards in the practice of genomics.

WHO’sGenomics Committee should be the custodian of guidance on how to deal with the ethical and social ramifications of genomics, including the global governance of genomic information.

Organizations in Member States, especially funding agencies, academic institutions, and governmental units should be attentive to ELSIs and to efforts being made by WHO and other international bodies to develop solutions to outstanding issues related to genomic ELSIs.