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Global Call to Boost Diversity of Genomic Medicine

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The COVID-19 pandemic provides another painful example of the healthcare disparities experienced among ethnic populations. These disparities are not unique to COVID-19, but are the latest consequence of longstanding gaps in population understanding, inclusion in research and access to targeted care.

As the industry moves towards more precise disease screenings, diagnostics and treatments thanks to genomic research, these disparities will grow. Analysis found 78% of people in genome-wide association studies are of European descent. Additionally, researchers from the Broad Institute of MIT and Harvard and Massachusetts General Hospital found data from the UK Biobank had a 4.5 times higher prediction accuracy for people of European ancestry than those of African ancestry, and two times higher accuracy than those of East Asian ancestry.

“The lack of diversity in research studies is leading to blind spots,” said Elissa Prichep, Project Lead, World Economic Forum. “Translated to the clinic, this means non-white minority populations may receive less accurate preventative screenings, less reliable diagnostics, less targeted treatments.”

To support policy-makers, scientists, research participants and others in developing approaches that will lead to more inclusive genomic research, a new World Economic Forum policy framework can help unlock data and safeguard against the harms that can transpire when genomic data is used unchecked.

This work was developed in collaboration with more than 30 global leaders and written from a “future of healthcare” perspective to address the unique and challenging issues raised with the use of genomic data, beyond those that arise with use of physical samples. The focus on emerging economies is intended to ensure consideration of differing perspectives and needs informed by these countries’ diverse historical, societal and cultural contexts.

“A deeper understanding of the genetic diversity across populations will transform healthcare research, promote tailored healthcare delivery and reduce the disease burden across the African continent,” said Thomas Kariuki, Director of Programmes, The African Academy of Sciences. “To this end, the World Economic Forum’s white paper elevates critical policy and ethical considerations in protecting individuals and ensuring equitability in international collaborations.”

“Advances in genomics research are accelerating the medical breakthroughs that will improve health for all people,” said Francis Collins, Director of the National Institutes for Health. “However, it is important to remember that the data driving these advances begins with human volunteers who consent to providing it for research. This whitepaper encourages greater consideration of the perspective of research participants, and provides tools to help policy makers and scientific leaders navigate the important ethical and societal issues associated with genomic research.”

The white paper includes a scalable policy framework in categories of consent, data privacy, data access and benefit sharing, which offers 21 policy principles including autonomy, accountability, dignity and cooperation. The study highlights six ethical tensions – such as the tension of balancing individual privacy and societal benefit – to show the competing ethical priorities surrounding genomic data and underpin the policy framework. To assist in thorough, diligent and nuanced discussion, the documents also provide a set of questions to guide ethical policy development.

“There is vast potential in the collection and use of genomic data to realize the promise of precision medicine, but we must develop forward-looking policies around genomic data before significant amounts of this data is generated,” said Catalina Lopez-Correa, Chief Operating Officer, Ruta N Medellin. “Low- and middle- income countries and emerging economies now have a unique opportunity to be ahead of the game by proactively developing policies around genomic data, and the World Economic Forum’s white paper will be extremely helpful in guiding policy development through providing frameworks and guidance around genomic data.”

The white paper should be used to drive multistakeholder discussion and decision-making, with the intent that policy-makers, business leaders, researchers and others leverage and adapt this work for use in a local context. To support this, the white paper is released with a companion ethical tensions guidance document and genomic data policy resource list.

Insufficient genomic data policies expose countries and communities to the risk that certain actors will extract genetic and biologic information from their population and use it for their own benefit. These risks have previously been realized – harming the Havasupai in the southwestern United States, the San in Southern Africa and others – and will occur again without undertaking a multistakeholder approach towards developing policies and regulations in a local context and with the inclusion of local populations.

The World Economic Forum’s Platform on Shaping the Future of Health and Healthcare aims to ensure that the 9.7 billion people on earth by 2050 have equal rights to access the highest standards of health and healthcare. In accordance with this mission, we are grateful to contribute a Genomic Data Policy Framework and Ethical Tensions white paper, as part of a set of tools.

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Strengthen ‘One Health approach’ to prevent future pandemics

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The COVID-19 pandemic demonstrates “intimate” linkages between the health of humans, animals and ecosystems, as zoonotic diseases spread between animals and people, the World Health Organization (WHO) chief said on Wednesday. 

While the concept of One Health – where multiple sectors communicate and work together to achieve better public health outcomes – may have once seemed simple, “it is no longer”, WHO Director-General Tedros Adhanom Ghebreyesus said, opening the 27th Tripartite Annual Executive Committee Meeting World Organization for Animal Health (OIE). 

“We can only prevent future pandemics with an integrated One Health approach to public health, animal health and the environment we share. Now is the time to take our partnership to a new level”, he underscored.  

Zoonoses on the rise 

The WHO chief maintained that to keep people safe, One Health must be translated into local-level systems.  

He pointed out that approximately 70 per cent of all emerging and re-emerging pathogens are zoonotic, jumping from animals to humans, warning that “we don’t know when the next threat – the next disease X – will emerge”.  

“It is clear, however, that One Health must be about more than zoonoses”, Tedros spelled out. “We cannot protect human health without considering the impact of human activities that disrupt ecosystems, encroach on habitats, and further drive climate change”. 

These activities include pollution, large-scale deforestation, intensified livestock production and the misuse of antibiotics, along with how the world produces, consumes and trades food. 

Effective collaboration needed 

As set out in the WHO Manifesto for a healthy and green recovery from COVID-19, the UN health agency supports a greater One Health emphasis on connections to the environment. 

“Paradoxically, the COVID-19 pandemic is giving us a unique opportunity to drive real change”, said the top WHO official, noting that One Health will be the focus of upcoming G7 and G20 meetings. 

He flagged the need for more science, better data and bolder policies across multiple sectors, “with a whole-of-government and whole-of-society approach”.  

“Expectations for the Tripartite, and the need for effective collaboration, have never been higher”, he said. 

Citing closer collaborative efforts at regional and country levels, and progress in joint areas of work, including the launch of the United Against Rabies forum, Tedros said that advances are also being made in establishing governance structures to curb antimicrobial resistance, and noted that the Global Leaders Group held its first meeting earlier this year. 

Expert Council in the works 

The UN health agency chief said that WHO will support and host the secretariat of a One Health High Level Expert Council, which will advise the expanded Tripartite members on action priorities, building consensus and collaboration.  

“We also need to ensure that all partner organizations have the resources to play this role jointly”, he stated. 

The Tripartite consists of WHO, OIE and the Food and Agriculture Organization (FAO) with the UN Environment Programming (UNEP) joining this year. 

For its part, WHO will scale up investment and work through its disease programmes and technical networks to strengthen the One Health workforce for outbreak alert and response. 

“We are at a critical juncture. We must build on this momentum to strengthen the One Health approach, with public health and disease prevention as its central pillar”, Tedros underscored. 

The WHO chief concluded by saying: “If the pandemic has taught us anything, it’s that we’re stronger together”. 

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COVID infections drop 16% worldwide in one week

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In its latest update on the COVID-19 pandemic, the World Health Organization (WHO) said that although the number of gobal infections have fallen by 16 per cent in a week – 500,000 fewer cases – regions, including Europe, are still in the grip of the virus whose variants are spreading. 

The number of coronavirus deaths also declined in all regions by 10 per cent over the same period, with 81,000 fatalities reported in the last week, the UN health agency said in its weekly epidemiological update on Tuesday.  

2.3 million victims 

This brings the overall number of people who died from COVID-19 to more than 2.3 million, according to WHO.  

Moreover, there were 2.7 million cases of new coronavirus infections last week, bringing that total number to just over 108 million.  

Five-out-of-six regions reported a double-digit percentage drop in the number of new cases, with Russia recording an 11 per cent decrease, the United States a 23 per cent drop and the United Kingdom a 27 per cent fall. 

Only infections in the Eastern Mediterranean Region increased, by seven per cent. 

The UN health agency data, which is gathered from its global membership, also said that the European and Americas regions continue to see the greatest drops in absolute numbers of COVID-19 cases. 

In some European countries, this is “likely (owing) to a strong combination of public health and social measures”, the UN agency said, before cautioning that the majority of European nations continue to experience “high or increasing” infection rates among older age groups “and/or high death rates”. 

It cited France, UK, Russia, US and Brazil as having the highest case tally in the past week. 

Variant spread 

Detailing the spread of the three main COVID-19 mutations, which have raised concerns over faster virus transmission and whether they are less susceptible to available vaccines, WHO said that the so-called “UK variant” (VOC 202012/01)  is now present in 94 countries across all regions – eight more than the previous week. 

The “South African variant” (VOC202012/02) has been traced in 46 countries, an increase of two, while the “Brazilian/Japanese variant” (P.1) is present in 21 countries, up by six.  

Citing genetic sampling of the UK variant, the WHO report noted that the proportion of people infected with VOC 202012/01 “has increased in the past weeks, indicating community transmission in a number of countries”. 

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‘Constellation’ of post-COVID symptoms will impact global healthcare

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Far more research is needed into the “constellation” of sometimes debilitating symptoms among people who’ve recovered from COVID-19, the World Health Organization (WHO) said on Friday, adding that it “will impact” global health systems. 

“We know that this post-COVID-19 condition – or as some patients also call it ‘long COVID’ and some clinicians call it ‘long COVID’ – is a heterogenous group of symptoms that occur after the acute illness”, said Dr. Janet Diaz, Team Lead, Health Care Readiness at WHO

“So, these are symptoms or complications that can happen potentially a month after, three months after, or even six months after, and as we are learning more, we are trying to understand the real duration of this condition.” 

Mental and physical ills are ‘real’ 

Citing reported symptoms such as neurological and physical illness, Dr. Diaz noted that an unspecified number of sufferers had been unable to return to work, once they had recovered from the acute sickness caused by the new coronavirus

“We are concerned obviously with the numbers of patients infected with SARS-CoV-2 virus that the numbers…just by the magnitude of the pandemic, will impact health systems.” 

Although comprehensive data on the condition is not yet available, the WHO official insisted that “these (symptoms) were real”.  

“Some of the “more common” ailments were “fatigue, exhaustion and post-exertional malaise, cognitive disfunction”, along with what some patients called “brain fog”, Dr Diaz said, describing a “constellation of symptoms”.  

Complications 

Further research is also needed to drill down into how many COVID-19 sufferers who did not require intensive care unit (ICU) treatment still went on to develop the condition. 

“What we know this far is that patients experiencing (a) post-COVID-19 condition could have been hospitalized patients, those in the ICU. So, we do know that has happened in patients who are very sick, but also in patients who were not managed inside the hospital…they have had complications and they have had persistent symptoms or new symptoms…or symptoms that waxed and waned, that came and went after their acute illness.” 

To promote a better understanding of post-COVID sickness and support patient care and public health interventions, the WHO has called on clinicians and patients to report data on symptoms to the Organization’s Clinical Platform.  

The case report form – which is available in multiple languages – has been designed to report standardized clinical data from individuals after they have left hospital or after recovering from acute illness. 

“What we don’t know is why it’s happening, so what is the pathophysiology … of this condition…the researchers are really working hard to get to the answers of these questions,” Dr. Diaz said. 

Vaccine deal inked 

In a related development, UN Children’s Fund UNICEF announced on Friday a deal to distribute the Pfizer-BioNTech COVID-19 vaccine, potentially before the end of March.  

The agreement is on behalf of the COVAX platform, primarily for developing nations, set up by the WHO,  The Coalition for Epidemic Preparedness Innovations (CEPI) and GAVI, the Vaccine Alliance. 

“This supply agreement allows UNICEF to procure up to 40 million doses that have been secured under the COVAX Facility’s Advance Purchase Agreement with Pfizer/BioNTech to be available throughout 2021”, the UN agency said in a statement.  

Emergency use approved 

The Pfizer-BioNTech jab was the first to receive WHO Emergency Use Listing (EUL) on 31 December 2020.  

It requires ultra-cold chain storage facilities which UNICEF has secured with partners to support governments in their roll-out of a variety of COVID-19 vaccines, it said. 

As of Friday 12 February 2021, WHO’s coronavirus tracker reported 107,252,265 confirmed cases of COVID-19, including 2,355,339 deaths. 

Regionally, the Americas have seen most cases to date, with 47,814,602 infections, followed by Europe (36,132,951), South-East Asia (13,141,859), Eastern Mediterranean (5,951,021), Africa (2,694,171) and Western Pacific (1,516,916).

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