New Delhi: The World Health Organization (WHO) has called for a public consultation on the sharing of genetic data of pathogens during infectious disease outbreaks.
The global body has also released a draft code of conduct on this and is inviting comments on the document.
The six-page document aims to put together a protocol on how countries can share genetic sequence data (GSD) of pathogens during infectious disease outbreaks, in an “open and timely” manner and in a way that is “equitable”.
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Having access to this genetic data can help in understanding and controlling outbreaks. It will allow better tracking of epidemics, predicting its spread, evaluating existing therapies and urgently coming up with new ones. It will also help in the development of diagnostic tests, drugs and vaccines.
The WHO says this is important because there has been unevenness in the timelines between when countries start reporting disease and between when data on the genetic sequences of the pathogen is made public.
In the recent past, India has been slow and reluctant to be transparent on disease data. For example, Indian government authorities finally disclosed the presence of Zika cases in India several months after they were detected.
But globally and for the WHO, this remains an important issue especially after the repeated public health emergencies with Ebola and Zika, especially in 2016 and earlier emergencies such as the MERS-CoV in 2015.
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What the new code proposes
The two underlying hopes of the code is that information will be shared quickly and in a way that is fair to the parties who do share the information. It says there should be a commitment by all those involved to make full data publicly available and at no additional cost to the country experiencing the outbreak.
The rest of the code goes into details for how scientists may want to approach the research, analysis and publishing of the genetic sequence data of the pathogens.
“With the advent of next generation sequencing, the depth/extent of available information will expand further,” says the code.
For example, it says that sequencing should happen fast and one way to speed it up is to do the processing of samples close to the site of its collection. This would also build local capacity while simultaneously reducing degradation of the samples.
The code proposes 21 days as the timeframe for generating data and releasing it, after receiving samples.
The code also goes into detail on how this data can be academically published. It cites the International Committee of Medical Journal Editors and calls upon countries to publish pathogen GSD as early as possible, even publishing the very first set of sequences because this could “inform on the origin of the outbreak as well as the choice of diagnostics, therapeutics, and vaccines”.
The code even acknowledges apprehensions that researchers have about publishing nascent research, where others may work on their findings without credit to those who disclosed the original data. The code suggests disclaimers, management of intellectual property and other comments on ethics to academics.
Fitting into the international health regulations
The WHO has been discussing the issue of the sharing of GSD on pathogens, for the last few years, coinciding with the global crisis on Ebola, Zika and MERS-CoV, which all were dominating headlines in 2015 and 2016.
In 2017, the WHO held a “blueprint meeting” on GSD of pathogens and several stakeholders asked to better understand if the reporting of pathogen GSD fits into the International Health Regulations (IHR) framework.
The International Health Regulations (IHR) allow public health authorities and researchers to collaborate with “mutual trust” over shared information. Many participants in 2017 recommended that reporting of GSD of pathogens should be included in the IHR framework.
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In 2016, the WHO laid tracks for the sharing of GSD of pathogens, saying in a policy statement that it will advocate for two key things: that these pathogen genome sequences be made available as rapidly as possible and then subsequently, to be shared equitably.
The same year, the WHO released a guidance document on ethical issues during disease outbreaks and said that there is a “moral obligation” to quickly gather information during a disease outbreak in order to form the best public health response.
The document further said: “Rapid data sharing is critical during an unfolding health emergency. The ethically appropriate and rapid sharing of data can help identify etiological factors, predict disease spread, evaluate existing and novel treatments, symptomatic care and preventive measures, and guide the deployment of limited resources.”