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.
Stockholm+50: Accelerate action towards a healthy and prosperous planet for all
The United Nations General Assembly agreed on the way forward for plans to host an international meeting at the highest possible level in Stockholm next June, during the week of World Environment Day. The event will commemorate the 50 years since the United Nations Conference on the Human Environment and serve as a contribution to accelerate action towards a more sustainable society.
The Declaration of the United Nations Conference on the Human Environment was made in 1972 in Stockholm, Sweden, resulting in what is often seen as the the first step toward the development of international environmental law, recognizing the importance of a healthy environment for people, and creating the UN Environment Programme (UNEP).
Five decades after the 1972 Stockholm Conference, the Government of Sweden, with support from the Government of Kenya, will host Stockholm+50, an international meeting in 2022 to commemorate the 50 years since the United Nations Conference on the Human Environment and its outcome documents, as a contribution to the environmental dimension of sustainable development to accelerate the implementation of commitments in the context of the decade of action and delivery for sustainable development, including a sustainable recovery from the coronavirus disease (COVID-19) pandemic.
The international meeting, “Stockholm+50: a healthy planet for the prosperity of all – our responsibility, our opportunity”, will take place in Stockholm on 2 and 3 June 2022, following a UN General Assembly resolution. In three leadership dialogues, the meeting will reflect on the urgent need for actions towards a healthy planet and prosperity of all, achieving a sustainable and inclusive recovery from the COVID-19 pandemic, and accelerating the implementation of the environmental dimension of Sustainable Development in the context of the Decade of Action. The meeting will also reinforce the messages and the outcomes of the event to commemorate UNEP’s 50th anniversary (UNEP@50), which will have taken place in March 2022, in Nairobi.
Per Bolund, Sweden’s Minister for the Environment and Climate, and Deputy Prime Minister, said “Our aim is clear, we want Stockholm+50 to make a concrete contribution to accelerating the transformation to a sustainable future. We call this meeting to commemorate the fiftieth anniversary of the 1972 conference. We are running out of time and urgent action is needed. These challenges are global, and we must meet them with a global response that drives action on the ground.”
Inger Andersen, Executive Director of UNEP, who was on 11 October appointed by UN Secretary-General António Guterres as the Secretary-General of the Stockholm+50 international meeting, said: “We need to urgently work to transform our economies and societies, but our branches will spread only as far as our roots are deep. By remembering Stockholm at 50, we also remember how the world came together to heal the ozone layer in 2013, phase out leaded fuel this year and stop endangered species from going extinct. By convening in Stockholm, we also recommit to human and planetary health, responsibility, prosperity, equality and peace – as we have seen only too clearly in COVID-19.”
COVID-19 deaths at lowest level in nearly a year
Although COVID-19 deaths continue to decline, vaccine inequity persists, the head of the World Health Organization (WHO) said on Wednesday, again calling for greater support for developing countries.
Agency chief Tedros Adhanom Ghebreyesus reported that the death toll from the disease is now at its lowest level in almost a year.
“Deaths are declining in every region except Europe, where several countries are facing fresh waves of cases and deaths. And of course, deaths are highest in the countries and populations with the least access to vaccines.”
Tedros appealed for global cooperation. “Countries that continue to roll out boosters now are effectively preventing other countries from vaccinating their most at-risk populations,” he said.
Missing the mark
As of Wednesday, there were more than 238 million COVID-19 cases worldwide, and more than 4.8 million deaths.
WHO had previously pushed governments to vaccinate 10 per cent of their populations by the end of September, a target which 56 nations missed, most of them in Africa.
Tedros said even more countries are at risk of missing the 40 per cent target to be achieved by the end of the year. Three countries – Burundi, Eritrea and the Democratic People’s Republic of Korea – have yet to start vaccinations.
“About half of the remaining countries are constrained by supply. They have a vaccination programme underway, but don’t have enough supply to accelerate enough to reach the target,” he said.
Tedros urged countries and companies that control global vaccine supply to prioritize distribution to the COVAX solidarity initiative and the African Vaccine Acquisition Trust (AVAT).
Meanwhile, WHO and partners are working with other countries, such as those affected by fragility or conflict, to strengthen technical and logistical capacity for vaccine rollout.
“With aggressive and ambitious action, most of these countries can still reach the 40% target by the end of this year, or be on a clear pathway to reaching it.”
Crisis in Tigray
Tedros also addressed the escalating crisis in northern Ethiopia, where a nearly year-long war in the Tigray region has left up to seven million people in urgent need for food and other assistance.
The conflict has spilled over into neighbouring Afar and Amhara, further increasing needs and complicating response efforts. Aid is not reaching the area “at anywhere close to the levels needed”, he said, and communications, electricity, other basis services remain cut off.
WHO and partners are calling for unfettered access to the affected regions, as the lives of millions of people are at stake, Tedros told journalists.
“People with chronic illnesses are dying due to lack of both food and medicine. Nearly 200,000 children have gone without critical vaccinations,” he said
“When people do not have enough food, they are more susceptible to deadly diseases, as well as the threat of starvation, and that’s what we’re now seeing in Tigray.”
Global health community prescribes climate action for COVID recovery
Ambitious national climate commitments are crucial for States to sustain a healthy, green recovery from the COVID-19 pandemic, according to a new UN health agency report launched on Monday in the lead-up to the COP26 climate change conference in Glasgow, Scotland.
Based on a growing body of research confirming numerous and inseparable links between climate and health, the World Health Organization’s (WHO) COP26 Special Report on Climate Change and Health spells out that transformational action in every sector, from energy, transport and nature to food systems and finance is needed to protect people.
“The COVID-19 pandemic has shone a light on the intimate and delicate links between humans, animals and our environment”, said WHO chief Tedros Adhanom Ghebreyesus. “The same unsustainable choices that are killing our planet are killing people”.
An urgent call
WHO’s report was launched at the same time as an open letter, signed by over two thirds of the global health workforce – 300 organizations representing at least 45 million doctors and health professionals worldwide – calling for national leaders and COP26 country delegations to step up climate action.
“Wherever we deliver care, in our hospitals, clinics and communities around the world, we are already responding to the health harms caused by climate change”, the letter from the health professionals reads.
“We call on the leaders of every country and their representatives at COP26 to avert the impending health catastrophe by limiting global warming to 1.5°C, and to make human health and equity central to all climate change mitigation and adaptation actions”.
Fossil fuels ‘killing us’
Both the report and open letter come as unprecedented extreme weather events and other climate impacts are taking a rising toll on everyone.
Heatwaves, storms and floods have taken thousands of lives and disrupted millions of others while also threatening healthcare systems and facilities when they are needed most, according to WHO.
Changes in weather and climate are threatening food security and driving up food-, water- and vector-borne diseases, such as malaria, while climate impacts are also negatively affecting mental health.
“The burning of fossil fuels is killing us. Climate change is the single biggest health threat facing humanity”, states the WHO report. And while no one is safe from the health impacts of climate change, “they are disproportionately felt by the most vulnerable and disadvantaged”.
Climate actions far outweigh costs
Meanwhile, air pollution, primarily the result of burning fossil fuels, which also drives climate change, causes 13 deaths per minute worldwide, according to WHO.
The report states clearly that the public health benefits from implementing ambitious climate actions far outweigh the costs.
“It has never been clearer that the climate crisis is one of the most urgent health emergencies we all face”, said Maria Neira, WHO Director of Environment, Climate Change and Health.
“Bringing down air pollution…would reduce the total number of global deaths from air pollution by 80 per cent while dramatically reducing the greenhouse gas emissions that fuel climate change”, she pointed out.
Dr. Neira added that a shift to more nutritious, plant-based diets “could reduce global emissions significantly, ensure more resilient food systems, and avoid up to 5.1 million diet-related deaths a year by 2050”.
Call to action
Although achieving the Paris Agreement on climate change would improve air quality, diet and physical activity – saving millions of lives a year – most climate decision-making processes currently do not account for these health co-benefits and their economic valuation.
Tedros underscored WHO’s call for all countries to “commit to decisive action at COP26 to limit global warming to 1.5°C – not just because it’s the right thing to do, but because it’s in our own interests”, and highlighted 10 priorities in the report to safeguard “the health of people and the planet that sustains us.”
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