Wednesday, January 09, 2019

WHO: Public consultation - Pathogen genetic sequence data (GSD)















#13,777


A little over a decade ago (2007-2008) much of the conversation surrounding avian flu was over Indonesia's refusal to share H5N1 samples with the World Health Organization and CDC over so called `intellectual property rights'.

For those who would like to relive this low point in international cooperation, you may wish to revisit:
Progress Made On Virus Sharing At Last Week's Meeting In Geneva

Indonesia Backtracks On Virus Samples
Indonesia: Still Withholding Samples

First They Say They Will, And Then They Won't
Confusion Over Indonesian Agreement With WHO
Indonesia Stops Sharing Virus Sequences
At the same time, Indonesia famously stopped reporting human infections as well, although in the summer of 2008 it was finally announced by WHO: Indonesia Agrees To Resume Bird Flu Notifications.

Sadly, despite the terms of the 2005 IHR regulations - where member nations had agreed to develop mandated surveillance and testing systems, and to report certain disease outbreaks and public health events - Indonesia's foot dragging in the sharing of disease outbreak information is far from unique (see Why No News Isn't Necessarily Good News).

While public chastisement is uncommon in diplomatic circles, we've seen signs of growing frustration over the lack of progress on the IHR, and failures in the timely sharing of information on a variety of fronts, including:
And of course, there are outbreaks and incidents which we don't know about, or only have hints.  A good example came in early 2016 in Libya's Under Reported Burden Of H5N1 (FAO Workshop), where we saw an FAO report which cited `at least 4 deaths' due to H5N1 in Libya beginning in December of 2014, and more than 100 suspected or confirmed poultry outbreaks.
Yet `officially',  Libya has never reported a human H5N1 infection to WHO and their only OIE report in 2015 listed 12 chickens affected by H5N1.

Despite already having frameworks and agreements in place for the sharing of disease outbreak information, virus samples, and genetic sequence data (GSD), there are obviously still obstacles in the way of full disclosure by international partners.


In an attempt to smooth the way towards better sharing of information, the WHO has released a 6-page draft WHO’s code of conduct for open and timely sharing of pathogen genetic sequence data during outbreaks of infectious disease pdf, 434kb, and is asking for public comment.  

Public consultation - Pathogen genetic sequence data (GSD)
 
WHO’s draft code of conduct for open and timely sharing of pathogen genetic sequence data during outbreaks of infectious disease

Pathogen genetic sequence data (GSD) is an increasingly valuable source of information in understanding and controlling outbreaks of infectious disease. With the advent of next generation sequencing, the depth/extent of available information will expand further. A key concern in recent outbreaks has been variable timelines between the start of an outbreak and the public availability of the first and subsequent genetic sequences.

WHO strongly supports public access to sequence data to inform public health and research decision-making during outbreaks, the equitable sharing of benefits derived from the use of such data, and the legitimate interests of data providers. WHO has consulted with many stakeholders and institutions working in the pathogen sequencing arena, including those who have been involved in applications to recent outbreaks. Based on these consultations, and on lessons learned from recent outbreaks as part of the data sharing workstream of the WHO R&D Blueprint, WHO is proposing elements of a code of conduct for GSD sharing in infectious disease outbreaks.

Through this code of conduct WHO seeks to contribute towards an enabling environment for sharing of pathogen GSD where equitable benefit sharing and the needs of data providers around the world can be addressed so that rapid international sharing of sequence data can occur consistently, in accord with IHR 2005, allowing public health authorities, product developers and researchers to collaborate more effectively from a position of mutual trust with respect for submitters’ rights to the information they provide.

WHO’s code of conduct for open and timely sharing of pathogen genetic sequence data during outbreaks of infectious disease pdf, 434kb

The draft document is made available here for public consultation. Please send any comments on the attached comment form to bruniquelv@who.int, with your name and affiliation by COB 28 January 2019. Comments may be submitted by individuals or organizations. These comments may be made available at a later date, and by submitting comments you are giving permission for the comments to be made publicly available.

WHO will finalise the Code of Conduct, after taking into account comments received.
 
Nearly fourteen years after its adoption, fewer than half the countries of the world self-report having met the core requirements of the IHR. But even among those who have - timely reporting continues to be problematic for a variety of political, economic, and societal reasons. 

http://www.euro.who.int/__data/assets/pdf_file/0011/242588/IHR-Factsheet.pdf

As the WHO IHR infographic above reminds us, `Until all sectors are on board with the IHR, no country is ready'.