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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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Health & Wellness

Healthcare Ratings of the World’s Countries

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The latest (October 17th) issue, of the leading medical journal, The Lancet, provides the most detailed analyses and ratings ever, of the healthcare that is provided in each of 204 countries. These ratings are based on a comprehensive set of 42 ratios, such as, “Mortality from breast cancer for females aged 20–64 years” divided by “Incidence of breast cancer for females aged 20–64 years.” All 42 ratios are effectiveness-of-treatment measures. That is the only scientific way to measure the quality of a nation’s healthcare.

Here, in order, are the top 113 countries, those that score above 54, on a scale where the top score is 96 and the bottom score is 22 — which latter country (not shown here) is Central African Republic, which rated 1 or 0, totally lacking, on a number of categories. These 113 countries are listed according to their total score. So, any country that isn’t listed here can reasonably be considered to have very poor quality medical care:

SCORE: COUNTRY (and rank)

96: Japan — world’s best medical care

95: Iceland — world’s second-best medical care

94: Norway — world’s third-best medical care

93: San Marino, Switzerland

92: Andorra, Singapore

91: Finland, France, Luxembourg, Monaco

90: Canada, Ireland, Netherlands, Slovenia, Spain, Sweden

89: Australia, Italy, South Korea

88: UK (ranked as #21)

87: Belgium (#22)

86: Austria, Germany

84: Denmark, Portugal

83: Malta, N.Z.

82: Czech Republic, Estonia, Kuwait, USA

81: Israel (#33)

80: Cyprus, Greece, Qatar

79: Costa Rica, Croatia, Taiwan 

78: Bermuda (#40)

76: Peru, Puerto Rico

75: Lebanon (#43)

74: Chile, Colombia

73: Cuba, Poland

72: Hungary, Thailand

71: Oman, Panama

70: Albania, China, Iran,  Jordan, Latvia, Lithuania, Romania

69: Greenland, Russia, Turkey, Uruguay

68: Tunisia (#63)

67: Malaysia, Maldives

66: Brunei, Libya, Montenegro, Sri Lanka

65: Brazil (#70)

64: Bosnia, Ecuador, Guam, Saudi Arabia

63: Bulgaria, Paraguay, Serbia, UAE

62: Armenia, Cape Verde, Cook Islands, El Salvador, Moldova, Namibia, Seychelles

61: Argentina, Bahamas, Barbados, Bahrain, Mexico, North Macedonia, Palestine, Venezuela

60: Antigua, Northern Mariana Islands, South Africa, Vietnam

59: Kazakhstan, Rwanda, St. Lucia

58: Botswana, Iraq, Morocco, Syria

57: Jamaica, Nicaragua, Ukraine

56: Georgia, Malawi, Mauritius, Trinidad

55: Philippines, Sao Tome

To find the fields of strength and of weakness in the healthcare that is provided in each country, see the tables that are presented on pages 11-16 of the pdf of the article, which pages also show the detailed ratings of each of the 204 nations’ medical care. However, that article provides no rankings, but only scores. The rankings that are shown in the present article are derived from the scores in that article, but are not shown in that article. That article presents the countries only in alphabetical order: it provides no rank-order of them. For example: the United States was one of the four countries that were ranked lower than 28 countries, such that the next lower-ranked country, after those four, Israel, ranked as being #33; and, therefore, the U.S. ranked somewhere among #s 29 and 32 among the 204 nations, or, roughly, as being ranked as number 30 or 31.  

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‘Very tough’ months ahead in COVID battle- WHO

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Facing another critical juncture in the COVID-19 pandemic, the World Health Organization (WHO) chief told reporters on Friday that a “very tough” few months lie ahead with too many nations seeing an exponential increase in cases. 

Tedros Adhanom Ghebreyesus said some countries were now on a “dangerous track” and the worrying rise was leading to hospitals and ICUs “running close or above capacity – and we’re still only in October.” 

“We urge leaders to take immediate action, to prevent further unnecessary deaths, and essential health services collapsing, and schools shutting again.” 

Action needed 

The WHO Director-General said countries needed to “conduct honest analysis and consider the good, the bad and the ugly.” 

For those who have brought transmission under control, he said now was the time to “double down, to keep transmission at a low level, be vigilant, ready to identify cases and clusters, and take quick action.” 

He said there were “incredible stories of hope and resilience, of people and businesses responding creatively to the outbreak, and we need to share these widely.” 

Contact tracing is essential he added, and clear instructions on how to go about it, so more mandatory stay at home orders can be avoided. 

Oxygen running low 

Turning to the need to share all resources in the COVID fight equitably, Tedros noted that a heavy toll was being taken on the world’s supplies of clinical oxygen, so crucial for those patients who need to be intubated, and many countries simply do not have enough. 

The “global oxygen gap” is particularly acute in some of the poorest nations, where some have only five to 20 per cent of what they need for patient care.  

In June, around 88,000 large cylinders were needed each day worldwide, to cope with the caseload, but with daily infections rising to around 400,000, that need has now risen to 1.2 million cylinders, just in low and middle income countries alone. 

Somalia, Chad and South Sudan, were totally reliant on cylinders from private vendors, that were expensive, and with a long distance to travel often, said Tedros. 

But now, WHO is working with ministries of health in those countries to design oxygen plants which fit their local needs, “which will result in sustainable and self-sufficient oxygen supply”, he added. 

‘End-to-end solutions’ 

“The oxygen project, reflects WHO’s commitment to end-to-end-solutions and innovation, to do what we do better, cheaper, and reach more people”, he said, giving the example of a scheme underway to harness solar power, to run oxygen concentrators in remote places that lack a reliable electricity supply. 

“Oxygen saves lives of patients with COVID-19, but it will also save some of the 800,000 children under five, that die every year of pneumonia and improve the overall safety of surgery”. 

A better world, means ensuring that oxygen is available to all, Tedros added. 

World Polio Day week 

The WHO chief also flagged the start on Saturday, of World Polio Day week, with partners around the world organising events and raising awareness of the need to eradicate polio, once and for all. 

Over the summer, the wild polio virus was banished from Africa, thanks to the efforts of hundreds of thousands of health workers reaching millions of children with vaccines, marking “one of the greatest public health achievements of all time.” 

But the risk of resurgence always remains, which cases continue, and following an initial suspension of polio and other routine immunizations due to the pandemic, vaccinations drives have now resumed, said Tedros. 

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WHO: Focus on fundamentals as COVID-19 caseloads rise

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London, UK, Covid-19 restrictions in place in Soho. IMF/Jeff Moore

As COVID-19 cases continue to accelerate, particularly in Europe and North America, the World Health Organization (WHO) is advising governments and people everywhere not to let their guard down, for the benefit of those hospitalized, or working on the front line of the battle to end the pandemic. 

“I know there’s fatigue but the virus has shown that when we let our guard down, it can surge back at breakneck speed and threaten hospitals and health systems”, agency chief Tedros Adhanam Ghebreyesus told journalists on Monday. 

Last week, WHO reported that the pandemic has entered a worrying phase as the northern hemisphere winter season approaches. 

At the time, the caseload in Europe was almost three times higher than during the first peak of the pandemic in March. 

Break transmission chains 

Tedros said he was encouraged to see many leaders communicating with their populations about targeted measures necessary to slow coronavirus spread and protect health workers and health systems. 

He pointed out that as cases rise, the number of people needing hospital beds and intensive care also increases. And although nurses and doctors now have a much better understanding of how best to treat people with the virus, the situation could put them and patients at risk.  

“So, it’s important that all governments focus on the fundamentals that help to break the chains of transmission and save both lives and livelihoods”, he said. 

“This means active case finding, cluster investigations, isolating all cases, quarantining contacts, ensuring good clinical care, supporting and protecting health workers and protecting the vulnerable.” 

Tedros underlined that everyone also has a role to play through practicing physical distancing, wearing masks, avoiding crowds and other recommended measures. 

We Are Family 

WHO announced that one of the biggest anthems from the disco era is being refashioned as a “clarion call” for the COVID-19 pandemic. 

‘We Are Family’, by the American group Sister Sledge, will be featured in a new campaign to promote global solidarity, unity and collaboration in the face of the disease. 

Kim Sledge, one of the four sisters who sang the dancefloor classic, will re-record a special edition of the 1979 hit which will be released online on 9 November.   

Part of the proceeds will go towards pandemic response and strengthening health services around the world. 

 “This is a solidarity effort for a global concern”, said Ms. Sledge, speaking via video link.   

“We all – every tribe, every tongue, every nation, every people – have the banner of love over us, and desire to bring us together in this world to fight the kinds of things that come against who we are.” 

Get up everybody and sing 

The new version of ‘We Are Family’ will be accompanied by a video featuring celebrities, frontline heroes and members of the public.   

People worldwide are encouraged to join the #WeAreFamily campaign, launched on Monday, by recording videos with their close family and friends singing the song and then sharing their efforts on social media.  

The World We Want organization, a global social impact enterprise, is also a partner in the campaign.   

Founder Natasha Mudhar said she was asked why the song was being released now, and not when the pandemic was first declared back in March. 

“And the reason why now is that the pandemic that we are all facing is as relevant as it is today as it was five, six months ago”, she said. 

“With our music video that we’re producing…we want it to be kind of a real clarion call that this beautiful, real, global world family is coming together in unity, in solidarity, not just in 2020 but also looking to 2021 as well, to address any global health challenge that we ever face, including and beyond the COVID pandemic.”

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