Those who contracted COVID-19 are experiencing what it’s like to have a condition that is difficult to diagnose without clear treatment options. This is the norm for people living with a rare disease. There are 7,000 rare diseases identified so far, often with broad symptoms, varying in severity from patient to patient. This causes not only a lengthy and difficult diagnosis process, but also a lack of available data for treatment given only a handful of people living in the same country are suffering from the same disease. In fact, treatments may be underway in one country unknown to the patients in another.
Over the last two years, the World Economic Forum’s precision medicine team led a pilot project called Breaking Barriers to Health Data, designed to ensure that people living with rare and other complex diseases were not missing out on life-saving diagnoses and treatments.
The health data consortium was developed with the Australian Genomics Health Alliance, Genomics4RD, Genomics England, and Intermountain Healthcare as well as 85 stakeholders from academia, government, and industry with the aim of sharing genomic data for rare diseases across borders.
The team produced a proof of concept that outlines how countries can come together, use pre-existing datasets of coded and de-identified patient information and access other datasets across country borders with similar data types. Australia and Canada reached an agreement on how to deploy this proof of concept and will likely test it later this year.
“Sorting through the human genome is like going through 100,000 digital photos – it’s a complex task that takes time and money,” said Lynsey Chediak, Project Lead, World Economic Forum. “It takes on average five to seven years to diagnose a rare disease. I was one of the lucky ones, a person living with a rare disease diagnosed at the age of 5. But, due to the time to diagnose, in some places, one-quarter of children will not live to see their tenth birthday. That can change. Sharing genomic data is a huge undertaking, but it is not particularly difficult technically. The larger challenge is how to form the necessary relationships between institutions that enable trust and transparency and sustained, predictable operations. Our project showed us that this can be done.”
Many countries want to share data in theory but are unable to do so due to data security, patient privacy and incompatibility in operating standards. A federated data system is a technical solution that can mitigate many of these concerns. Participating in a sensitive health data consortium is the only way to maximize volumes of data already collected, sitting in silos around the globe.
This has been a valuable exercise to explore how to maximize the utility of our existing datasets. Participating in this mode of international collaboration will be increasingly important to progress our shared knowledge of genomics – particularly in rare diseases,” said Tiffany Boughtwood, Manager of the Australian Genomics Health Alliance. “Working with the Forum over the last two years, we have created a clear governance structure and strong partnerships with like-minded genomics institutions beyond Australia’s borders.”
“This is an exciting proof of concept, showing how standards developed by the Global Alliance for Genomics and Health community can be put into practice and have a real impact on patients living with a rare disease,” said Oliver Hofmann, Co-Chair of the Global Alliance for Genomics and Health (GA4GH) Large Scale Genomics working group.
“Interoperability is key to enabling the responsible sharing of genomic and health related data for the benefit of humans everywhere,” said Peter Goodhand, Chief Executive Officer of the Global Alliance for Genomics and Health. “At GA4GH, we develop the technical standards that allow for such interoperability, but getting them into real-world practice is the most critical step. Through collaborations like the Breaking Barriers to Health Data project – which leverages the GA4GH Data Use Ontology and Framework for Responsible Sharing of Genomic and Health-related Data – we are beginning to see how our work can add real value to the global patient community.”
“As the parent of a child with an undiagnosed rare condition, access to state-of-the-art genomic testing is like winning the lottery,” said Durhane Wong-Rieger, President of the Canadian Organization for Rare Disorders. “The idea that my child’s genomic data could be interpreted using a federated database and then contribute back to this data system is like winning the trifecta. As president of the Canadian Organization for Rare Disorders, I am excited to be part of this pilot, and as chair of Rare Disease International, I anticipate the day when all patients across the world will take part.”
“Limited data is a common feature of rare diseases, resulting in high uncertainty, which impacts every part of people’s lives,” said Nicole Millis, Chief Executive Officer of Rare Voices Australia. “Australia’s National Strategic Action Plan for Rare Diseases calls for improvements to rare disease data collection and use, including best-practice safe storage and data sharing. One of the critical enablers of this is ‘state, national and international partnerships.’ The safe and anonymous sharing of rare disease data across borders will provide key decision-makers at all levels with greater knowledge of rare diseases, which can facilitate more responsive and appropriate services for people living with a rare disease, as well as their families and carers.”
“Care4Rare Canada is thrilled to be an active partner in this collaboration led by the World Economic Forum,” said Kym Boycott, Chair of Genetics at CHEO, Senior Scientist at the CHEO Research Institute, Professor at the University of Ottawa, and project lead of Care4Rare. “We set out to design Genomics4RD and its governance in a way that would enable this type of rare disease data connection. We have long believed that international data consortia, such as this, will lead to more diagnoses for our patients otherwise living without answers.”
By following the findings in this guide, the Forum hopes to encourage a cohesive, symbiotic relationship between health institutions throughout the world that may otherwise have different models of consent, operations, security and technology.
The Breaking Barriers to Health Data project aims to craft and test a scalable governance framework to support the effective and responsible use of federated data systems to advance rare disease diagnosis and treatment. It is part of the World Economic Forum’s Health and Healthcare platform. The first case study will focus on enabling cross-border access to rare disease genomic data between four countries.
WHO approves Chinese COVID-19 vaccine for emergency use
A COVID-19 vaccine produced in China has been given the green light for global rollout, potentially paving the way for its use in underserved countries, the World Health Organization (WHO) announced on Friday.
The UN agency has approved the Sinopharm vaccine for emergency use, which is a prerequisite for inclusion in the global vaccine solidarity initiative, COVAX.
The vaccine is easy to store, making it suitable for locations with limited resources, and proved 79 per cent effective in clinical trials.
“The addition of this vaccine has the potential to rapidly accelerate COVID-19 vaccine access for countries seeking to protect health workers and populations at risk”, said Dr Mariângela Simão, WHO Assistant-Director General for Access to Health Products.
“We urge the manufacturer to participate in the COVAX Facility and contribute to the goal of more equitable vaccine distribution.”
A vaccine first
The Sinopharm vaccine is produced by Beijing Bio-Institute of Biological Products Co Ltd, a subsidiary of China National Biotec Group (CNBG).
It is the first vaccine to carry a vaccine vial monitor. The vials have a small sticker that changes colour as the vaccine is exposed to heat, so health workers know whether it can be safely used.
The vaccine is recommended for adults 18 and older, with a two-dose schedule spaced over a period of three to four weeks.
Although few people over 60 participated in the clinical trials, WHO did not recommend an upper age limit for use as data suggests the vaccine is likely to have a protective effect in older persons.
Safely expediting vaccines
WHO emergency use listing (EUL) allows countries to expedite their own regulatory approval to import and administer COVID-19 vaccines.
The EUL process assesses the suitability of new medicines, vaccines and diagnostics during public health emergencies.
The goal is to make them available as rapidly as possible, while maintaining strict criteria of safety, efficacy and quality.
The Sinopharm vaccine is the sixth to receive the EUL approval. The others are by Pfizer/BioNTech, Astrazeneca-SK Bio, Serum Institute of India, Janssen (Johnson & Johnson) and Moderna.
Risky business: COVID-19 and safety at work
The numbers of home workers around the world have been swelled by the COVID-19 pandemic, putting a fresh focus on the need for employers to ensure that their employees are working in a safe environment. On the World Day for Safety and Health at Work, we look at some of the ways the UN is helping employers and governments to keep people safe, wherever they work.
The world of work has been upended by COVID-19, and the effects are likely to be long-lasting. Before the pandemic, there were some 260 million home-based workers (not including domestic or care workers). The International Labour Organisation (ILO) estimates that figure could have doubled, with as many as one in three workers remote working in North America and Europe, and one in six in sub-Saharan Africa.
The rollout of vaccines, mainly in the developed world, has increased the possibilities of a return to the workplace, but many companies and workers have signalled a wish to retain a degree of home working, after seeing some of the benefits. For employers, these include minimising the risk of contagion and potentially spending less on expensive office space whilst staff no longer have to spend commuting to and from the workplace.
‘If you’re losing your mind, I’m right there with you’
However, whilst some are enjoying baking bread or taking a stroll during a conference call, and using the commuting time to indulge in new pursuits, others have been craving a return to a more structured work-life routine.
“I tell myself daily that I am grateful to have a job with understanding supervisors and colleagues. But all of it is hard. If you’re also a working mum losing her mind daily, know that I’m right there with you,” says Paulina, a New York-based teleworker.
“I have chaired meetings with a laptop and headphones on one side of a tiny, New York City kitchen while cooking lunch and having a screaming toddler wrapped around my ankles. While all of this is cute once or maybe twice, regular screams of children in the background can only be tolerated for so long. I should know, because I passed that line sometime in July.”
Stories such as this explain why a recent study by the International Labour Organisation (ILO) found that 41 per cent of people who worked from home considered themselves highly stressed, compared to 25 per cent of those who worked on-site.
“The most effective way to eliminate the risk of contagion in a work context is, for those who can do it, teleworking, says Joaquim Nunes, head of occupational health and safety at the ILO, “But we still need to pay attention to the physical and mental well-being of workers”.
As teleworking is likely to remain an important factor in many people’s jobs, Mr. Nunes says that work-related policies will have to be updated to reflect the new reality.
“There’s a good chance that the rise of teleworking during the COVID-19 pandemic will permanently change how we live and work. Many governments have realised this, and are taking a fresh look at the rights of employees working from home. For example, companies should ensure that workers do not feel isolated, whilst giving them the right to disconnect, rather than being online 24 hours a day”.
In Chile, a law adopted early in March 2020 goes some way to addressing some of these concerns. The legislation recognizes the right of remote workers to disconnect for at least 12 continuous hours in a 24-hour period. In addition, employers cannot require workers to respond to communications on rest days or holidays.
A healthy home?
Beyond the question of comfort and mental health, is one of physical safety. It is often said that most accidents happen at home, so, if this is where much of the working week is spent, should employers be responsible for making sure apartments aren’t death traps?
“For now, there are no easy answers when it comes to ensuring a suitable home office environment”, says Mr. Nunes. “However, we can say that the same principles that apply to other workplaces apply to teleworkers, in that employers have a general duty of care, as reasonably practicable. Employers can’t control the workplace when staff are working from home, but they can provide ergonomic equipment to workers, such as suitable chairs, and help them to assess their own risks and to learn about how to maintain healthy lifestyles.”
Teleworking is also challenging for enforcement agencies, as usually inspectors do not have free access to the private spaces. One solution to ensure compliance with legislation could be virtual inspections, which are already taking place in Nordic countries on a voluntary basis. “These involve labour inspectors video calling a worker at home, and being shown their work chair, desk, and lighting setup”, explains Mr. Nunes. “These inspections can serve as a way to monitor the home workplace and provide advice, but also raise understandable privacy concerns”.
Whilst the new teleworkers and their employers grappled with their new reality, a large part of the global workforce had no choice but to go to a physical place of work. The difficulties faced by health care workers were widely reported, but employees in several other industries had to brave the trip to the workplace – sometimes on crowded trains and buses – and, often, interact with other people, at considerable risk to their health.
In the US, these fears led to collective action by workers at Whole Foods, a grocery subsidiary of Amazon. On March 31, 2020, in response to seeing their colleagues testing positive with COVID-19, workers decided to call in sick, and demand sick leave, free coronavirus testing and hazard pay. This was followed in April by work stoppages at some of America’s biggest companies, including Walmart, Target and FedEx.
Whilst early advice on protection and prevention focused on measures such as hand washing, the wearing of masks and gloves, and physical distancing, the ILO quickly realised that more needed to be done to address work-related issues.
“In the workplace, you have to think about more than just the individual worker: the whole environment needs to be protected’, explains Mr. Nunes. “One example that many of us will have come across is in shops and supermarkets, where it is now common to see PVC separators between cashiers and customers. Work surfaces are also being cleaned much more frequently, but this raises other concerns that need to be addressed, such as the potential for skin complaints or respiratory problems caused by the chemicals in cleaning products.”
Whilst areas such as healthcare and retail have been grappling with these issues for several months, other parts of the economy could soon be opening up. In several countries, plans are being made to allow gatherings of large numbers of people to take place, in venues such as concert halls and cinemas, and, heading into summer in the northern hemisphere, the range of permitted tourist activities looks set to expand.
However, for this to take place, and for economies to safely open, governments and employers, in collaboration with workers, will need to make sure that workers in these, and all other industries, are safe at their workplaces, and confident they will not be exposed to unnecessary risks, particularly those related to COVID-19.
Biotechnologies: Commission seeks open debate on New Genomic Techniques
European Commission published, at the request of the Council, a study on New Genomic Techniques (NGTs). The study shows that NGTs, which are techniques to alter the genome of an organism, have the potential to contribute to a more sustainable food system as part of the objectives of the European Green Deal and the Farm to Fork Strategy.
At the same time, the study finds that the current GMO legislation, adopted in 2001, is not fit for purpose for these innovative technologies. The Commission will now start a wide and open consultation process to discuss the design of a new legal framework for these biotechnologies.
Commissioner for Health and Food Safety, Stella Kyriakides, said: “The study we publish today concludes that New Genomic Techniques can promote the sustainability of agricultural production, in line with the objectives of our Farm to Fork Strategy. With the safety of consumers and the environment as the guiding principle, now is the moment to have an open dialogue with citizens, Member States and the European Parliament to jointly decide the way forward for the use of these biotechnologies in the EU.”
NGTs developing rapidly in many parts of the world
NGTs, which can be defined as all techniques to alter the genome of an organism developed after 2001 (when the EU’s legislation on GMOs was adopted), have rapidly developed over the last two decades in many parts of the world, with some applications already on the market of some EU trade partners.
The main findings of the study are:
- NGT products have the potential to contribute to sustainable food systems with plants more resistant to diseases, environmental conditions and climate change effects. Moreover, the products can benefit from higher nutritional qualities such as healthier fatty acid content, and reduced need of agricultural inputs such as pesticides;
- By contributing to the EU’s objectives of innovation and sustainability of food systems, as well as a more competitive economy, NGTs can have benefits for many sectors of our societies;
- At the same time, the study also analysed concerns associated with NGT products and their current and future applications. Concerns included the possible safety and environmental impact, for example, on biodiversity, the coexistence with organic and GM-free agriculture, as well as labelling;
- NGTs are a very diverse set of techniques and can achieve different results, with some plant products produced by NGTs being as safe as conventionally bred plants for human and animal health and for the environment;
- The study finds that there are strong indications that the current 2001 GMO legislation is not fit for purpose for some NGTs and their products, and that it needs adaptation to scientific and technological progress.
The study will be discussed with EU ministers at the Agriculture and Fisheries Council in May. The Commission will also discuss its findings with the European Parliament and all interested stakeholders.
In the coming months, an impact assessment, including a public consultation, will be carried out to explore policy options concerning the regulation of plants derived from certain NGTs.
The study was prepared following a request from the Council of the European Union which, on 8 November 2019, asked the Commission to carry out “a study in light of the Court of Justice’s judgment in Case C-528/16 regarding the status of novel genomic techniques under Union law.”
The study was conducted by the Commission and informed by expert opinions and contributions from Member States’ competent authorities and EU-level stakeholders via targeted consultations.
A wide range of participants was involved in the consultation, which preceded the preparation of the report. All contributions are published.
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