Pioneering work carried out at the Wellcome Trust Centre for Mitochondrial Research has led to the development of IVF techniques that bring hope to families with mitochondrial disease. Next week, MPs will have the chance to vote to allow further research to be carried out and enable the technique to be licensed (on a case-by-case basis) to allow affected families to have children who are free of debilitating mitochondrial disease. John Williams, Wellcome Trust head of science strategy and impact, explains why it is important that the law catches up with the science…
Mutations in the tiny powerhouses in your cells – the mitochondria – can cause serious disease and premature death. These mutations are thankfully rare, but the effect on families can be devastating. Researchers at the University of Newcastle have developed a technique that allows faulty mitochondria, which are passed from a mother to her children, to be replaced with healthy ones from a donor.
This research is a great example of collaboration and shows what can be achieved when patients and families work closely with insightful and talented researchers and clinicians. It is also an excellent opportunity to prove that the UK ecosystem is able to come together and allow pioneering work to be undertaken and to lead into meaningful, potentially game-changing, clinical practice.
In order not to miss this opportunity, we need the whole of the community to work together, from affected families to researchers – and now, importantly – legislators.
Over the past decade, public and scientific consultations have taken place, experts have shared their knowledge and scientific evidence, and families and others have shared their experiences of living with mitochondrial disease.
The existing legislation includes appropriately rigorous safety checks and licensing requirements. This is not something that we are seeking to change. For any new discovery we should of course have a full and open debate, check the evidence, and engage with the public before moving forward – as has been done on the issue of mitochondrial donation.
We must also recognise that the pace of scientific discovery can out-pace changes in the law. We want to ensure that the law allows further research into mitochondrial donation to be conducted, so that when (and only when) it is deemed to be safe enough to ensure a baby can be born without mitochondrial disease, there is no unnecessary additional delay for patients wanting to use the technique.
Now we must trust that those responsible for approving amendments to existing legislation recognise the significance of their decision – not only for the families directly affected by mitochondrial disease – but also to show how the UK supports its world-class scientists.
The discussion taking place in the House of Commons on Tuesday 3rd February is one of the critical last pieces in the jigsaw whose picture shows how open-minded, honest and evidence-based discussions enable the UK to be a beacon for translating patient-focussed, curative and health-transforming innovations from lab to clinic. This is something that we should be incredibly proud of.
Find out more about mitochondrial disease, and how mitochondrial donation could help, on the University of Newcastle research pages and in these previous posts on the Wellcome Trust blog. You can read the proposed amendment to the legislation on parliament’s website. If you want to encourage your MP to be present for the discussion and vote you can contact them, parliament’s website provides details on a variety of ways to do so and many MPs are on also on Twitter.
Image credits: Niamh and Niamh and Alison thanks to Alison Maguire, Needle and egg cell – Wellcome Images, Jigsaw, by Leighton Pritchard on Flickr – CC-BY-NC-SA
Our image of the week shows an old Hakim (a practitioner of traditional medicine) as he looks out of his shop at the hustle and bustle of the street outside. The photograph was taken near Jama Masjid, Old Delhi, India.
India has a long history of traditional medical knowledge systems such as Ayurveda and Unani and many are still widely practiced today. The country has been a pioneer in medical science, but high-quality, universal healthcare for the masses remains elusive. Some studies suggest there may only be one formally trained physician per 8,000 villagers in India, and that informal practitioners like hakims, roadside dentists and bonesetters outnumber qualified doctors 23 to 1.
This photograph is one of many stills taken by award-winning audio-visual act BLOT! during their research for a new music video exploring India’s informal health sector. The video was commissioned by Wellcome Collection as the first part of a new Wellcome Collection global project called ‘Medicine Corner’ – a yearlong programme of cultural activity that will celebrate and interrogate India’s diverse cultures of medicine.
The project launched this week in Chennai with a live performance by BLOT! and will culminate in a major exhibition in Mumbai in January 2016. Along the way the project will involve many different artists, practitioners and partners, including the British Council, the Dharavi Biennale. It will explore health practices, healing and well-being, and examine the challenges and opportunities of health care in India in the 21st century.
BLOT!’s video is a “light-hearted audio-visual journey that revolves around select, splendid street-doctors, quacks and messiahs of India”. To experience it for yourself, visit the Medicine Corner India website.
In a letter to The Times today, leading figures from science and academia express their support for the approval of a legal amendment to allow mitochondrial donation, a technique that could prevent babies being born with debilitating illnesses. Five Nobel laureates (Prof Sir John Sulston, Prof Sir John Gurdon, Prof Sir John Walker, Prof Sir Tim Hunt and Prof Sir Paul Nurse) are joined by former bishop of Oxford, Lord Harries of Pentregarth, previous chair of the HFEA (the body that licenses such techniques) Baroness Deech and eminent philosopher and ethicist Baroness Warnock, whose work in the late 1980s created the UK’s internationally-admired regulatory framework for embryology and fertility research and medicine. Wellcome Trust director Dr Jeremy Farrar is also a signatory on the letter, whose publication coincides with this morning’s announcement that this will be debated in the House of Commons on Tuesday 3rd February…
Having been waiting for a date for a parliamentary discussion and vote on this issue for some time, Jeremy Farrar commented: “Over the past seven years, Britain has been engaged in an exemplary process for evaluating scientific, ethical and public opinion about mitochondrial donation, which has revealed broad support on all three fronts. The Government is right to ask Parliament to support regulations that will allow the law to catch up with public and scientific opinion, and we urge MPs and peers to vote for them.
“Parents who know what it means to care for a sick and suffering child with mitochondrial disease are the people best placed to decide, with proper medical advice and safeguards, whether mitochondrial donation is right for them. It is time to allow them to make that choice.”
Sir, Mitochondrial diseases are devastating inherited conditions causing disability and death, which are passed from mothers to children. They are caused by faulty mitochondria — “batteries” that provide cells with energy — and cannot usually be prevented or cured.
Mitochondrial donation, sometimes known as “three-person IVF”, offers some affected families a chance of having a healthy child, but the law currently prevents clinical use. After seven years of consultation and inquiry that have revealed broad public, scientific and ethical approval, the government has proposed regulations that would allow these families to benefit.
We urge parliament to support these regulations in votes that are expected imminently. A vote in favour will not allow clinics to offer mitochondrial donation immediately: they will still need a licence from the Human Fertilisation and Embryology Authority, which will be granted only with scientific evidence that any risks in each particular case are low. Passing the regulations now will allow this licensing process to begin, so that families do not face further delay.
The question that parliamentarians must consider is not whether they would want to use this technology themselves, but whether there are good grounds to prevent affected families from doing so. We believe that those who know what it is like to care for, and sometimes to lose, an extremely sick child are the people best placed to decide whether this technology is right for them, with medical advice and within the strict regulatory framework proposed. They have been waiting for the science for long enough. They should not have to wait for the law to catch up.
Prof Sir John Sulston
Prof Sir John Savill
Prof Sir John Tooke
Dr Jeremy Farrar
Prof Sir John Walker
Ms Aisling Burnand
Ms Liz Curtis
Prof Sir Paul Nurse
The Rt Rev. the Lord Harries of Pentregarth
Prof Jonathan Montgomery
Prof Sir John Gurdon
Prof Sir Tim Hunt
Prof Julian Savulescu
Prof Sir Ian Wilmut
Lord Walton of Detchant
Interested in becoming a Wellcome Trust Engagement Fellow? Find out what we’re looking for, and what makes this scheme different from the average academic fellowship. With the deadline for applications for the 2015 Engagement Fellowships coming up, Tom Ziessen from our Engaging Science team explains the scheme and answers some frequently asked questions…
At the Wellcome Trust, we’re not only interested in funding scientists and researchers to do science, we also want to encourage the public to explore health and wellbeing through the lens of scientific, historical and social research. We do this by funding public engagement projects (both directly and indirectly connected to research we fund), supporting the development of communities of artists, science communicators, researchers and others who deliver such projects and by directly delivering public engagement activity such as our exhibitions and events at the Wellcome Collection or our major education initiatives such as In The Zone.
We consider it important to connect and engage the public with the conversations around science and health. The Public Engagement Fellowship aims to support and develop upcoming stars in public engagement with science. We want to support future leaders to make a step change in their careers – helping them bridge the gap to something new.
We want to support these potential leaders in engagement with science to take the next steps on their journey, giving them the space, time and contacts to develop their engagement style and portfolio
What are we looking for?
Applicants should already have a strong track record in public engagement and a vision for how they hope the future of science and/or health will be changed by public engagement. The Fellowships aim to provide a space to explore how to make this vision a reality and take some bold strides towards that future.
Fellows are given the freedom to explore new ideas and perspectives, expand their skills and to develop new professional relationships. They are given access to (and are encouraged to spend time with) Wellcome Trust staff, with the hope this will lead to unique insights and useful connections. Fellows are also provided with space to work in The Hub at Wellcome Collection when in the area.
This is the fifth year of our Engagement Fellowship scheme and so far we have supported a range of artists, clinicians, historians and science communicators. Over the years we hope to grow our portfolio of Engagement Fellows to represent the wide diversity of individuals involved in delivering the public engagement activity supported by the Trust.
Along with more artists and science communicators we are keen to support academic researchers from biomedical fields as well as those researching social, historical and cultural dimensions of scientific knowledge, clinical practice and healthcare policy.
What do Engagement Fellows do?
Well that is up to the individuals who apply. The scheme is not about coming up with a specific project idea, but about personal and professional development in the sphere of public engagement. Whilst this will undoubtedly involve delivering public engagement projects, the focus for the scheme is on how this activity will further the skills and experience of the Fellow to lead them towards their vision. Fellowships also aim to provide the freedom to overcome barriers that are currently in the way of you achieving your vision.
There is not a specific goal to reach, or target to meet – and that’s what sets these fellowships apart. The focus is on giving you the opportunity to explore different approaches, with the aim of having an impact both on your career, and the wider field of public engagement. This differs from our other Engaging Science grants, which fund delivery of projects in which the principal aim is to engage the public with ideas about biomedical science.
You should be ready to grasp the “blank sheet” with both hands and make it yours. Previously funded Fellows such as Roger Kneebone and Kevin Fong have been exploring different approaches to healthcare, while Erinma Ochu has explored citizen science through game design and interactive storytelling. Greg Foot has been experimenting with incorporating insights from across the performing arts into how science shows are conceived, while Lavinia Greenlaw is encouraging people to think about how scientific and artistic endeavour derive from common ground.
What’s it like being a Wellcome Trust Engagement Fellow?
The best way to answer that is to ask the fellows themselves. Our Engagement Fellows have previously reflected on their experiences, with blog posts from Richard Barnett, Kevin Fong and a collective post that offers top tips for prospective applicants last year. We’re also giving you the opportunity to join us for a Twitter chat this Friday lunchtime (12.00-1.00pm) to put your questions to some current fellows and a representative from the Trust. You can tweet your questions in advance to @WellcomeTrust using the hashtag #AskWellcome.
How do I apply?
The next deadline for applications to be a Wellcome Trust Engagement Fellow is 13th February 2015. You can find all the information on how to apply on the Wellcome Trust website
Join us for a Twitter chat on Friday 30th January from 12:00-1:00pm and send in your questions using the hashtag #AskWellcome or leave them in the comments below. We will collect all the questions and answers and link to them in this post after the event. We have also created a Twitter list of current and past fellows so you can see what they are doing.
Image credits: Engagement Fellows 2014 by Wellcome Images; 132:365 – Scanning the Horizon by Charamelody on Flickr CC-BY-NC, Non-target by Wellcome Trust – CC-BY
Our fortnightly round-up of research news from the Wellcome Trust community…
New insight into genetics of antimalarial drug resistance
A global research collaboration has identified 20 mutations in the kelch13 gene – a known marker for artemisinin resistance – that appear to work with a set of background mutations in four other genes to support artemisinin resistance.
Carrying out the largest genome-wide association study of the malaria parasite Plasmodium falciparum to date, the researchers uncovered complex genetic interactions that enable the parasite to develop resistance.
“Our findings suggest that these background mutations emerged with limited impact on artemisinin resistance — until mutations occurred in the kelch13 gene,” explains Dr Roberto Amato, a first author and Research Associate in Statistical Genomics at the Wellcome Trust Sanger Institute and Oxford University’s Wellcome Trust Centre for Human Genetics. He compares it to the accumulation of genetic changes in pre-cancerous cells that only become malignant when critical mutations kick-off growth.
Since there is a large variety of continually emerging kelch13 mutations, it is difficult to use this gene alone as a surveillance marker, but monitoring parasite populations for a specific genetic background – in this case, a fixed set of four well-defined mutations in the fd, arps10, mdr2, and crt genes – could allow researchers to assess the likelihood of new resistance-causing mutations emerging in different locations, helping to target high-risk regions even before resistant parasites take hold.
“We are at a pivotal point for malaria control. While malaria deaths have been halved, this progress is at risk if artemisinin ceases to be effective,” says Nick Day, Director of the Mahidol-Oxford Tropical Medicine Research Unit (MORU) in Bangkok, Thailand. “We need to use every tool at our disposal to protect this drug. Monitoring parasites for background mutations could provide an early warning system to identify areas at risk for artemisinin resistance.”
The paper, Genetic architecture of artemisinin resistant Plasmodium falciparum, is published in Nature Genetics.
Researchers identify possible new target for epilepsy treatment
A single gene that coordinates a network of around 400 genes involved in epilepsy, could be a target for new treatments according to research published recently in Nature Communications.
The Wellcome Trust-supported study, carried out by researchers from Imperial College London, used novel computational and genetics techniques to systematically analyse the activity of genes in epilepsy, rather than taking the traditional approach of studying individual genes.
It is known that epilepsy has a strong genetic component but the risk is related to multiple factors that are ‘spread’ over hundreds of genes. Identifying how these genes are coordinated in the brain is important in the search for new anti-epilepsy medications. This requires a “systems genetics” approach that analyses how multiple genes work together to cause disease.
Researchers studied samples of brain tissue removed from patients during neurosurgery for their epilepsy. Starting with these samples, they identified a gene network that was highly active in the brain of these patients, and then discovered that an unconnected gene, Sestrin 3 (SESN3), acts as a major regulator of this epileptic gene network. This is the first time SESN3 has been implicated in epilepsy and its coordinating role was confirmed in studies with mice and zebra fish.
Dr Enrico Petretto, co-senior author of the study, said “systems genetics allows us to understand how multiple genes work together, which is far more effective than looking at the effect of a gene in isolation.”
Trust-funded researcher and co-senior author of the paper, Dr Michael Johnson, explained “we have taken a new approach, and identified a network of genes underlying the epilepsy itself in these patients and mapped its control to a single gene, SESN3. This offers hope that new disease-modifying therapies can be developed for the treatment of epilepsy itself”.
Study identifies key control mechanism for blood glucose levels
A team of researchers from the UK and the USA have found a novel pathway and hormone key to sensing and responding to low blood glucose levels. The research, carried out in mice, is published in Nature Neuroscience and could eventually help clinicians to devise new strategies to help control diabetes more safely.
The work identified the previously unknown pathway, buried deep within a region of the brain called the parabrachial nucleus. Here they found that a brain hormone, cholecystokinin (CCK), is a crucial sensor of blood glucose levels and orchestrates responses around the body when levels drop too low. Professor Lora Heisler, a Wellcome Trust funded researcher from the University of Aberdeen, said: “It is remarkable to find that such an incredibly small set of cells in the brain play such an important role in maintaining normal glucose levels.”
Dr Martin Myers, co-author from the University of Michigan, added, “We knew that CCK cells in the brain modify things like appetite and anxiety but they had previously been overlooked in terms of any link to blood sugar levels.
“The discovery of the important function of this brain hormone raises the possibility of using drugs targeting the CCK system to boost defences against hypoglycaemia, the clinical syndrome that results from low blood sugar. This can be extremely serious and in the most severe cases can lead to seizures, unconsciousness, brain damage and even death.”
In other news…
Researchers on the Wellcome Trust funded Avon Longitudinal Study of Parents and Children (ALSPAC) – also known as ‘Children of the 90s’ – have published an open access article on the influence of childhood growth on asthma and lung function in adolescence.
Researchers from the Wellcome Trust Centre for Neuroimaging at University College London are part of a team who have published a paper entitled “Ventral aspect of the visual form pathway is not critical for the perception of biological motion” in the journal PNAS.
Congratulations to Kevin Fong for the AAAS award for his book Extreme Medicine: How Exploration Transformed Medicine in the Twentieth Century – written during his time as a Wellcome Trust Engagement Fellow.
Congratulations are also in order for former Wellcome Trust Clinical Fellow in Malawi, Steven Gordon, who has won the ATS World Lung Health Award.
The ongoing Ebola epidemic in West Africa has shone a spotlight on the need for governments, organisations, companies and communities to work in together, with partnerships crossing borders and specialisms in order to make progress. During a session on pandemics at the World Economic Forum in Davos, Wellcome Trust director Jeremy Farrar spoke of the critical need for a unified body, working at the global level to improve global health, but added that it must have strong leadership, and be well funded. Expanding on these thoughts in a comment piece first published in the Wall Street Journal, he explores what needs to happen to enable the World Health Organization to live up to its full potential…
It killed nearly 300,000 people, but the influenza pandemic of 2009 was a lucky escape. The H1N1 strain of the virus turned out to be milder than initially feared, limiting deaths and severe illness. That was just as well, said an independent review at the time. The report concluded that the World Health Organization was ill-prepared to deal with any global public-health emergency. Among its recommended reforms: an international reserve of responders who could mobilise swiftly against a dangerous epidemic, clear command structures so the WHO could lead this response, and a contingency fund to pay for it.
As the WHO executive board gathers Monday to consider its response to the Ebola epidemic, which has so far claimed 8,500 lives, on the table is a paper whose recommendations will surprise no one who read the H1N1 report. Specifically, the recent paper recognises that in dealing with Ebola the WHO has lacked “the speed, co-ordination, clear lines of decision-making and dedicated funding needed to optimise implementation, reduce suffering and save lives.” These shortcomings have been evident since at least the 2003 SARS outbreak and have been further exposed by emerging threats such as the Middle East respiratory syndrome coronavirus and Southeast Asia’s artemisinin-resistant malaria. Yet while global epidemic surveillance has undoubtedly improved, the capacity to respond quickly and effectively when a threat is detected has not. Ebola has now focused the world’s attention on this critical need.
Yet even if the WHO grasps this historic opportunity, there are fundamental and systemic failings that underlie its inability to learn lessons. This essential organisation, with international legitimacy and respect unmatched in public health, has been held back by deep structural flaws and a chronic refusal to lead.
The abiding problem is illustrated by the executive board itself. This is supposed to be the WHO’s agenda-setting and implementation body. Yet with 34 members it is too big to be anything but indecisive or bound by the lowest common denominators. It can agree more easily on matters of epidemic surveillance, which require light commitments and minimal accountability, than on response, which requires investment and action. This is especially problematic because the WHO’s supreme decision-making body, the World Health Assembly, is even bigger with 194 member states. The assembly is an important source of legitimacy and could be the WHO’s greatest strength, but it must be paired with a streamlined and clear-sighted executive.
It also needs strong and decisive leadership if it is not to be paralysed by consensus. The director general’s mandate, however, is to implement the will of the member states—it is the job description of a manager, not a leader. It must be redrawn. The role’s capacity to act and affect change is further limited by a byzantine division of responsibilities between the WHO’s Geneva headquarters, six powerful regional offices dominated by the larger member states, and more than 150 country offices. This blurs accountability and duplicates functions, and at worst packs important positions with politically appointed placemen who frustrate the efforts of the WHO’s most able people.
These structural constraints have been exacerbated by the excessively narrow way in which the WHO leadership group interprets its mandate. It has chosen to emphasise the technical aspects of its role over the operational direction of epidemic responses. It has been a reluctant leader when eagerness is required.
Leaders of organisations with restrictive governance arrangements, such as most international agencies, have a choice: They can passively follow the wishes of their stakeholders, or they can set a more ambitious agenda that takes a firm position on what action is required and then challenge stakeholders to support it. The WHO needs leadership of the second kind that does not hide behind its mandate but strains against its limits. Gro Harlem Brundtland, the former prime minister of Norway and director general of the WHO from 1998 to 2003, tried to provide such leadership. Frustrated by her inability to win support, she walked away.
Such activist leadership would go well beyond proposing the limited if essential progress that is on the table next week. It would also be seizing the moment to advocate more radical reforms. A recent Chatham House report, for example, argued that the WHO must choose between scaling back the regional division in favour of a unitary structure with a powerful head office, or full decentralisation. With the problem thrown into sharp relief by Ebola, there may never be a better occasion to grasp this nettle.
Reform and proactive leadership is vital to the WHO because the WHO is vital to global health. No other institution has the potential to combine representative legitimacy with the capacity and mandate to act. But if the WHO fails to evolve, others such as the World Bank may feel they have to step in. The result will be Balkanised health governance, when a unified global system is needed. Margaret Chan, the present director general, has another two years in office. Convincing reluctant national governments to embrace real and effective renewal would be a fine legacy.
Details and recordings of the sessions on Global Health Security and Pandemics that Jeremy Farrar took part in at the World Economic Forum can be found here. This piece was first published in the Wall Street Journal on 23rd January.
For our Image of the Week this week we have a special guest post from artist and researcher Rebecca Harris…
This image shows part of my commission for the Eden Project’s new permanent exhibition ‘Invisible You: The Human Microbiome’ opening late April 2015. Funded by the Wellcome Trust, I am creating a hand and machine embroidered textile wall-hanging depicting a pregnant figure, which explores how microbes form us.
Our bodies are an enormous microbial communities, which work together to keep us healthy and as such we are referred to as an eco-system. Using this analogy of the body being like a geographical area, I established a method of representing the two-dimensional body with a three-dimensional effect similar to that the contours lines of a topographical map.
Translating medical imaging techniques (like MRIs) into machine stitch, I trace around each ‘slice’ of the body and the ‘landscape’ created is the chartered area of trillions of microbes to be explored and discovered. Covering this terrain are thousands of tiny hand embroidered stitches, French knots, to represent the microbial communities, which create a beautiful and seductive surface of ‘colonies’ occupying our ‘landscape’.
Working with Professor Michael Wilson, from UCL, we have ensured that the colours I use represent the main types of microbes. I wanted to give the viewer the sense of the varying settlements around the different parts of our bodies.
As many hours are yet to be spent sewing these tiny ‘microbes’ I am taking the work out into my local community to sit and sew, whilst talking about the ideas with interested viewers. The first date is at the Eden Project on 10th and 11th February. More details about these events can be found on my artist page.
Image credit: Rebecca D Harris.
Individuals’ health data is vital resource for health research and researchers have used this data for decades to understand more about the factors underpinning health and disease. Using large data sets has enabled us to find new ways to treat and prevent ill health. Without this data, we wouldn’t have made major advances in public health such as understanding the link between smoking and lung cancer, and finding out that people with high blood pressure have a higher chance of having heart disease or a stroke. New data regulations put forward by the EU risk damaging health research and progress by preventing researchers from being able to use data that is essential for their work. Beth Thompson, from the Wellcome Trust policy team, explains the importance of striking a balance between personal privacy and the collective good – and why these regulations could be a step backwards for health research…
All of us benefit from the knowledge derived from research involving personal data.
Studies involving personal data are essential to deliver further improvements in healthcare and public health. For many, this raises concerns about who has access to their data, how the data might be used, and whether their data could fall into the wrong hands. Data Protection law must find a way to protect individuals and respect these concerns, while ensuring that live-saving research can go ahead.
All privacy laws across Europe are based on the EU Data Protection Directive, which has achieved a widely accepted balance between protecting individual rights while permitting research. The directive does this by allowing EU member states to set up mechanisms so that sensitive personal data, such as data concerning health, can be used in scientific research. This data can only be used if strong safeguards have been put in place. (More on these below.)
The existing system works on this basis, and so long as the safeguards are followed, scientific researchers may access these large data sets without the need to trace each individual to obtain consent.
This approach has worked well since the directive was introduced over ten years ago and the rules have allowed important research to take place. Individuals’ data has been kept safe and there are no known cases of data breaches or misuse. We want this approach to continue in the new regulation and we oppose the EU Parliament’s suggested amendments, which would undermine this status quo.
Currently the law includes special rules for research because of the proven value of these studies to society. These special rules only apply to genuine scientific research and not for other purposes, such as market research or insurance decisions – and we want to keep it that way. It is very important to us that the research rules included in the new regulation are limited to genuine scientific research, in the same way as the current law. We don’t know of any examples of the research exemptions being misused for other purposes.
Consent is an important principle in health research, but the exemption in the current law is really important because there are instances where the requirement to seek individual consent would undermine the study. (You can read more about consent here.)
Where individual consent is not sought, the law and international guidelines require safeguards to be place, such as review of the research proposal by an independent ethics committee, to ensure that personal data is used appropriately. It is not – and should not be – easy for researchers to use personal health data without consent and many member states already have additional checks in place, carried out by the national data protection authority or a special confidentiality committee.
It is essential that researchers look after individuals’ data. Member states define these safeguards in their own laws and guidance, and typically a combination of technical, legal and organisational measures are used to protect individuals and their data from harm. For example, where possible, researchers use anonymised data or pseudonymised data (where the identity of the individual is masked), rather than fully identifiable data. Data is often encrypted, so that it can’t be read in the event of a data breach. Only genuine researchers who are trained in the safe use of data are allowed to access the data, and even then, they are only able to use the data in a secure environment. Researchers and organisations have contractual obligations to look after data and use it appropriately.
Personal data has made a vital contribution to improving health in the past and can continue to do for years to come. To make sure we all benefit from health research, we need to maintain the special research rules included in our current laws. In turn, researchers must continue to implement robust safeguards and keep up their strong track record of looking after data.
Protecting the future of health research doesn’t mean we have to compromise on the safety of our precious personal data.
Find out more about our new campaign on the EU Data Protection Regulation at www.datasaveslives.eu. We also continue to work on UK issues around the use of information from patient records for research. Read more about the Trust’s work on the use of personal information in research.
Image credits: Nurse in a hospital ward examining notes and Patient Notes both by Justine Desmond, Wellcome Images; Two scientists examining the patterns in data, Wellcome Library
Global business and political leaders, economists and intellectuals are descending on the Swiss town of Davos for the World Economic Forum. Among the 2500 participants is a delegation representing the Wellcome Trust, including our director, Jeremy Farrar, who is taking part in discussions on global health security and the issue of global pandemics.
Joining him are Wellcome Trust deputy chair, Kay Davies, chief investment officer Danny Truell, director of strategy, Clare Matterson and head of science strategy, performance and impact, John Williams.
Global Health Security – 1.45pm, Wednesday, 21st January
Renowned epidemiologists reflect on the state of global health security and the latest battle with Ebola.
- Peter Piot, Director and Professor of Global Health, London School of Hygiene & Tropical Medicine
- Thomas R. Frieden, Director of the Centers for Disease Control and Prevention
- Jeremy Farrar, Director of the Wellcome Trust (moderator)
You can watch this session live, at 1.45pm(GMT), on Wednesday 21st January – after which time the link will take you to a recording of the session. Watch: Global Health Security
Follow the discussion around this session on Twitter using the hashtag #globalhealth and pose your questions. The panel have agreed to take some questions from social media users as well as those in the room.
Pandemics: Whose problem? – 11.30am, Thursday 22nd January
As the Ebola outbreak has highlighted, the world’s initial ability to provide human and material resources to the affected countries has been abysmal. How can we better respond to future epidemics?
– What lessons can be learned from previous outbreaks?
– Who is responsible for taking action?
- Valerie Amos – Undersecretary-General for Humanitarian Affairs and Emergency Relief Coordinator, United Nations Office for the Coordination of Humanitarian Affairs (OCHA)
- Kofi Annan, Chairman, Kofi Annan Foundation, Secretary-General, United Nations (1997-2006)
- Moustapha Ben Barka, Special Adviser, Office of the President of the Republic of Mali
- Stanley M. Bergman, Chairman of the Board and CEO, Henry Schein
- Jeremy Farrar, Director of the Wellcome Trust
- Ertharin Cousin, Executive Director, UN World Food Programme (moderator)
You can watch this session live, at 11.30am(GMT), on Thursday 22nd January – after which time the link will take you to a recording of the session. Watch: Pandemics: Whose Problem?
You can search the World Economic Forum schedule for a list of all the sessions on global health. These include sessions on genomics, antimicrobial resistance and mental illness among others.
In addition, Kay Davies will be participating in a one-to-one interview with Reuters (8.15am GMT, Thursday 21st January) as part of their Global Markets Forum online, although this requires registration.
After time spent listening to members of our community – Trust staff, grantholders, and researchers from around the UK and the globe – the Wellcome Trust has updated its funding schemes to make them simpler and more flexible for applicants. Today we launch our new Collaborative Awards, enabling teams of researchers to apply together and bring new perspectives to the work they are doing. Wellcome Trust Director of Strategy Clare Matterson explains more about these grants, and looks at the importance of team work…
Working as a team is a key skill that we learn throughout our lives, starting as children. Last year my 11 year old daughter’s football club frequently lost 10-0 or even 15-0 – a dispiriting experience for the cold parents on the side-lines, let alone for the kids. They were not lacking talent at the game, but experience of how to work as a team. This year they have changed tack and have spent time understanding each other’s roles, and how to let others flourish. Now, they are winning and playing exciting matches.
And it’s not just 11 year olds. Examples of incredible team work are everywhere. Last week a pair of extraordinary climbers became the first to scale a sheer 3,000-foot rock face in Yosemite. Meanwhile, even further afield, Russia, America and Europe crossed boundaries of politics and language on the International Space Station to keep each other alive against the threat of a potentially deadly ammonia leak.
The more complex the issue, the more team work can lead to results that are more than the sum of their parts. This is especially true where our greatest challenges require solutions that bridge the divides between disciplines – biology, physics, chemistry, engineering, social science, humanities and more. Recently, the global health community has faced an unprecedented Ebola outbreak in West Africa. From supporting clinical trials to scrutinising the ethics of how research is done in an epidemic, partnership, flexibility and team working have been central to the response.
Our collaborative awards are a new category of funding that recognises the importance of teamwork in research, bringing together people from within or across disciplines to inspire new ideas and new ways of thinking. It’s just one part of our refreshed funding framework, which is structured around five broad categories of response mode funding – people, seeds, teams, places and resources.
Collaborative Awards are an alternative route of funding for those that may previously have thought about applying for our strategic awards. We are taking a fresh approach to how we fund work of strategic importance to the Trust’s mission, by identifying areas where we believe there is an opportunity for a step change, a priority need or sustained development of a new area.
For example, our fast-track funding for research on Ebola and our support for the Francis Crick Institute are prime examples of our strategic approach. We will work with our partners and with researchers to develop strategic opportunities, and we continue to encourage researchers with ideas that do not fit our response mode schemes to come and talk with us.
The key idea behind the response mode categories is that they complement each other. Our existing Investigator Awards and Fellowships are still available for individuals with curiosity, ideas and ambition wanting to ask questions and find answers. Similarly, we recognise that it’s often unexplored intersections between different disciplines where the most creative ideas are born.
We want to exploit these crossovers, but we know this often means people working outside their comfort zones. This is where our new Seed Awards come into their own: small awards for developing original, innovative and risky ideas or for generating preliminary data or resources towards a larger, possibly collaborative, research application.
Collaborations can be with existing partners or new ones. They could be within disciplines, across institutions, with those from other countries, or by mixing disciplines. There are endless possibilities, from novel partnerships between academia and business, for example in this new project investigating mood disorders by looking at the link between immunology and mental health, to projects where the humanities meet clinical science and neuroscience, such as the Hearing the Voice collaboration to understand the experience of voice hearing.
We have spent a long time listening to our community, who have told us that support for team projects is a key way we can support research. We are not specifying what a team should look like in terms of mix of people, disciplines or experience. What we are interested to understand is why they have come together, and what the benefit of the collaboration could be.
So, it’s over to you. What makes a great team? What challenges in health and science would be better approached by new groups of people? I hope our collaborative awards will encourage teams to consider these questions, look at our website, come and talk with us, and consider applying for funding.
To find out more about our collaborative awards visit the new grant pages on our website, where you can also find out more about our other updated funding schemes.
Dr Mark Thompson holds an impressive range of titles – he’s an associate professor in engineering science, principal investigator of the Oxford Mechanobiology Group and also a tutor and fellow in engineering science at Wadham College, University of Oxford. He holds a Wellcome Trust Affordable Healthcare in India grant, and is working on bringing down the cost of prosthetic limbs…
What are you working on?
I lead the Oxford Mechanobiology Group. We are engineers who apply mechanical analysis to understand the behaviour of living tissues under the forces that they experience in every day life.
Unlike engineering materials, tissues respond actively to force – for example the bones in tennis players’ serving arms become denser and stronger. The way that cells and tissues respond to mechanical force is fundamental to their healthy function, and abnormal responses are linked to important diseases including asthma, osteoporosis, atherosclerosis, diabetes, stroke, and heart failure.
In my group we use tissue and cell culture laboratory models alongside equipment for mechanical testing and devices for applying mechanical forces, and link these experiments with computer models to understand the link between mechanical forces and biological response in health and disease.
What does your average day involve?
There is no average day! As you can see from my job titles, I have several parallel roles. Leading my research group, writing grants and papers and supervising students takes up much of my time. I also lecture on engineering mechanics, solid mechanics and biomechanics and provide engineering tutorials at Wadham College. I enjoy lecturing as it gives me a chance to perform live demonstrations for example of fracture mechanics of glass or the biomechanics of tendon reflexes.
Why is your work important?
Engineering is the application of technology to change lives. Engineers understand the basic science that underlies new technologies but also see the big picture within which these must work. Engineers are essential for the process of translation of new technology into feasible therapies in the UK and elsewhere. Mechanics is obviously important in rehabilitation of human movement, but mechanobiology is showing that mechanical loads play vital roles in maintaining health at many length scales right down to the sub-cellular level.
Specifically in the project developing affordable prosthetic arms, we are using computational models of the biomechanics of the arm to allow us to explore many different designs. These models also give us ways of measuring how well a person fitted with a prosthetic arm performs a set of tasks. We will manufacture prototypes and collaborate with our clinical colleagues to perform trials in the UK and India.
What do you hope the impact of your work will be?
In the Wellcome funded project we hope to increase access to affordable functional prostheses and enable upper limb amputees in India and elsewhere to return to gainful employment.
Existing affordable prosthetic arms have a high rejection rate, and they are not providing the functionality required for the patient to return to meaningful employment. We are working on reducing weight, increasing speed, and providing a level of force responsive feedback that is comparable to much more costly prostheses.
How did you come to be working on this topic/in this field?
The topic arose from academic exchanges between the Indian Institute of Science, Bangalore (IISc), and the University of Oxford facilitated by the UK Government Science and Innovation Network in India. I chose a PhD project in the field of biomechanics thanks to the inspiration of my undergraduate tutor, Prof Brian Bellhouse, who was one of the first engineers to apply fluid dynamics to heart valves.
How has Wellcome funding helped you/your research/your career?
The funding has cemented together my research group with a full-time post-doctoral researcher, enabled us to work on a very exciting high impact project in India and so boosted our international profile.
What’s the most frequently asked question about your work?
“Can a mechanical engineer really help solve medical problems?” then “Biomechanics? I can tell you about this nagging pain in my leg when I run…”
Which question about your work do you most dread – and why?
There are no bad questions!
Tell us something about you that might surprise us…
I played Demetrius in a production of Midsummer Night’s Dream travelling with medical aid to refugee camps in the former Yugoslavia.
What keeps you awake at night?
Owls. We recently moved to the countryside.
What’s the best piece of advice you’ve been given?
“Spend two hours every week staring at a blank wall”. Keeping time in the calendar for creative thinking is essential.
The chain reaction question, posed by our previous spotlit researcher Prof Graham Williams, is this: Who is your favourite scientist, and why?
My favourite scientist (I hope I am allowed a mechanical engineer?) is Stephen Timoshenko, who defined the modern science of engineering mechanics. A Ukrainian immigrant to the US in 1922, he worked eventually at University of Michigan and Stanford.
Early on, while he was working at Westinghouse Electric Corporation, his elegant analysis of stress concentrations around holes upset the Harvard engineer, George Swain, but is now a foundational principle in mechanical analysis. In 1957 the American Society of Mechanical Engineers established a medal named after Stephen Timoshenko – he was its first recipient.
You can find out more about Dr Mark Thompson’s research and his publications on his profile page and the Oxford Mechanobiology Group homepage. For information on other projects we have funded via the Affordable Healthcare in India scheme see our funded projects page.
11 years after it was officially declared “lost”, the British-made Mars lander Beagle 2 has been located on the red planet.
Beagle 2, whose name honours the HMS Beagle ship that took Charles Darwin to explore new lands, was due to land on the surface of Mars on Christmas day, 2003. Its call-signal, composed by the band Blur, should have been sent back to Earth to let scientists know that it had landed, but sadly that signal never came.
Today’s announcement that cameras aboard NASA’s Mars Reconnaissance Orbiter have located Beagle 2 on the surface of Mars put an end to years of speculation about the fate of this plucky little spacecraft – the brainchild of Professor Colin Pillinger. Sadly the news of its landing, and evidence of the partial opening of its solar arrays comes too late for Pillinger to fulfil his dream of exclaiming: “The Beagle has landed!” He passed away in May last 2014, but is remembered fondly for his unique blend of enthusiasm and determination, which encouraged space academics and industry to collaborate in ways they hadn’t previously.
Beagle 2 hitched a lift to Mars aboard the European Space Agency’s Mars Express Orbiter and was due to carry out experiments to determine the chemical composition of Mars, study the weather and climate, and search for signatures of life in an attempt to help answer the age old question “are we alone?”
The Wellcome Trust gave a grant of £2.6m to pay for the construction of a vital piece of equipment – a miniaturised mass spectrometer and 12-oven, 31-valve gas analysis package – a central part of the “mini-lab” aboard Beagle 2.
The lander was only the size of two old-style dustbin lids in a clamshell configuration and had a total mass of less than 34Kg (compare that to the 899Kg of NASA’s Curiosity rover!).
Speaking about the development process, Pillinger compared the challenge of creating a miniature spectrometer to “reducing your family saloon to a glove compartment”
While the Beagle mission didn’t manage to fulfil its scientific mission, the work done on miniaturisation of instruments such as the mass spectrometer, has benefited the research community involved in subsequent space missions.
Confirmation of its discovery on Mars means that the UK is officially a member of an elite club of nations who have landed on Mars. The Soviet Union and USA are the only others to reach the surface of Mars and the so-called “Mars Curse” – that has lead to almost two-thirds of Mars missions ending in failure – means that only the NASA-led collaborations have achieved any meaningful science on the planet.
Today we’re just excited to hear that Beagle 2 landed on Mars – perhaps it’s time to update our strap-line? The Wellcome Trust – we’re officially out of this world!
New year – new you? Tempted by promises of detox diets, super-foods and high-tech work out plans? Before you pay out for them, take a moment to consider whether the claims are based on solid science, or if they are just seductive marketing claims designed to part you from your pennies. With support from the Wellcome Trust, the charity Sense About Science has launched a new interactive website, that lets you ask individuals and companies directly for evidence behind claims they make. Sense About Science’s Max Goldman explains why we’re encouraging everyone to Ask for Evidence…
From all directions we are told what we should and shouldn’t do: advice about diets, ways to stay healthy, fight disease, avoid chemicals, help the environment. Some of this advice is based on rigorous testing and evidence, but lots of it isn’t. How do we sift through the confusion and work out what to believe? We should find out what’s supported by evidence, and what isn’t.
Many medical research charities and many learned societies already make it their business to take on claims that hit the headlines – but organisations doing this, as opposed individuals, can only get us so far. Imagine if everyone joined in.
It’s already happening – Katy asked for evidence after a salesperson at Vision Express told her that her eyesight would get worse if she didn’t buy new lenses for her glasses. Vision Express investigated, realised the claim wasn’t based on the best available evidence, and promised to improve its staff training. Rita asked Planet Organic for evidence about its claim that wheatgrass could remove toxins from the bloodstream, and the claim was withdrawn from all the company’s promotional material. Even the café at Wellcome Collection, run by Benugo, was taken to task about the use of the word “detox” to describe one of their fresh juice blends, and it was swiftly removed.
By asking for evidence publicly and sharing these stories, people can engage with – and better understand – the medical, dietary, or other questions that affect them, and help others do the same. Ask for Evidence online not only encourages and helps people to ask, it becomes a place to highlight the companies and individuals who respond well to requests for evidence, and those who don’t.
Ask for Evidence online also has a help centre for people make sense of evidence they’re sent. This gathers together expertise from Sense About Science and the organisations we work alongside, shaped by our experiences and insights from 12 years helping people understand evidence and answering public questions about science – people can also ask for help directly from a scientist.
If companies, politicians, NGOs or journalists want us to buy their products, vote for them, donate to them or believe them, then they should all be prepared to provide the evidence to support their claims. To hold them to account, we all need to be the ones to ask.
Visit askforevidence.org to read more stories, see the latest from the campaign and, of course, to ask for evidence.
Image credits: Nutritional information – Wellcome Library, London; Morning wheatgrass shot, it tasted like grass by Merri on Flickr, CC-BY-SA.
It’s hot, it’s humid and you’re tasked with setting up a diagnostics lab ready to process samples that could contain a deadly virus. You’re far away from home, in a country struggling to contain Ebola. How do you cope? Leaving his lab in Cambridge, Professor Ian Goodfellow headed to Sierra Leone with the NGO International Medical Corps, to join a team putting together a diagnostic lab in Makeni. In the second of this two-part series, he explains the challenges the team had to overcome and talks us through an average day in an Ebola diagnostics lab…
During the first two weeks in Makeni, Sierra Leone, our focus was very much on getting the diagnostics lab operational as fast as possible. There was a real lack of diagnostic capacity in this area of the country the lab facility needed to go live prior to the opening of the treatment centre.
With no existing diagnostics facility, all samples were being driven (or sometimes flown on a UN helicopter) to a Centre of Disease Control (CDC) lab based in Bo. They were fantastic, but although they had a very quick turn around time for testing samples, the logistics of physically getting the samples to them meant the process was slowed down significantly. Creating a diagnostic facility in this area was key to speeding up diagnoses.
Opening a molecular diagnostic lab in the conditions we faced was not straightforward. There was a lot of waiting around for deliveries of equipment, loading the kit by hand and then shifting boxes around the camp. One of my lasting memories is having to ask the entire team to move a huge tent’s worth of equipment across the building site by hand, because the clinical staff needed the tent to store their personal protective equipment (PPE).
With the heat, humidity and the sheer volume of equipment we had to move across a live building site, it was a real challenge. What I hadn’t really factored in was that the first half of the team had already unloaded all the same boxes the previous two days into the first tent. Needless to say they were less than thrilled when we had to relocate them, but after a little discussion, the team did a fantastic job and all the kit got moved. A few days later (after the blisters had healed), this rather surreal situation became a source of amusement for us.
When the diagnostic lab opened, the rota was set up to stagger the number of people in lab, making sure we could cover the 6am-10pm opening times. Team members would start their shifts at 6am, 8am, 11am and 2pm, with the late shift staying until everything had been completed. A typical shift lasted around eight hours.
If you were working the early shift, an average day would be something like this:
Wake up and brave a cold shower. Try to find something for breakfast (the guest house didn’t serve breakfast until 7am). Don’t forget to take anti-malarial, take temperature (36.3C).
Wait and hope that the driver remembers to pick you up to take you to the treatment centre.
(Logistics and transport were typically good but there were times when we had to wait around for transport.)
Arrive at Ebola Treatment Centre (ETC). (Outside the gates, three rather cold looking members of the national ETC staff would greet us.)
Wash hands with bleach, have temperature taken and answer questions to check health status. (“Do you have any bruises?”, “Did you sleep well?” etc).
Boots sprayed with bleach before entry to the ETC. Pass through changing room, don scrubs and wellington boots (I often spent 10 minutes trying, and usually failing, to find two that fit!) in order to move into the lab in the “green zone”.
(The temperature in the mornings was similar to a typical British summer, but much colder than the local staff were used to. They would find ingenious ways of keeping warm – including huddling around the open doors of the industrial clothes driers!)
Arrive at the lab and unlock it, change footwear clogs and have a quick general look around the lab to make sure power is still on and nothing has leaked.
Put on cloth gown, two pairs of gloves and goggles. Time to make up the bleach – 10,000 ppm for the dunk buckets and isolators, 5000 ppm for everything else. Mop floors, swab benches and empty buckets from the previous day.
Inspect the isolators, which are used to work with Ebola positive samples, clean them out and set up for the day ahead. Check all the stock items in the lab – do we have enough aliquots of the various reagents? Where are the 1.5ml tubes in that huge tent again? Do we have enough EDTA blood tubes prepared for the Driver?
(The one thing I will not miss is the intense smell of chlorine, we used higher concentrations in the lab than they use in the rest of the ETC and in a confined environment the chlorine fumes got rather overpowering. Even the clinical staff at the ETC commented that outside the lab the smell of chlorine was strong.)
The second shift arrives. Discuss the results from the previous day – How many positives were there? Did anything go wrong? Did all the reagents behave as they should?
(The heat and dust had all kinds of effects on the equipment and reagents. The lack of a reliable Internet connection also meant we were unable to access troubleshooting guides so relied heavily on the experience and ingenuity of team members to solve any problems.)
The first set of the day’s samples turn up. “Major” (probably not his real name) drives them in.
(Major is a locally employed member of staff who has done a heroic job over the course of the outbreak. Until the Makeni Lab opened, he was driving samples to Bo, some five hours away, everyday – an example of the sheer dedication of the locals to controlling the epidemic. All the Sierra Leonean members of staff were very proud to be able to help in any way they could.)
Don additional plastic aprons and face shields for handing and sorting incoming samples. The paperwork is brought into the lab and wiped down with bleach. Samples are put into the large isolator (named the ‘BFG’) to be opened. One of the team opens the sample pots in the isolator and inspects the bags without touching anything inside– has anything leaked? Are there are any sharps in there.
(We had been warned that during the early stages of the epidemic samples would turn up in all kinds of containers, sometimes with the needles still in the bags. Thankfully we never experienced this.)
Count the total number of samples and compare to the number of sample request forms received. One by one carefully remove each sample from its packaging and wipe it down with bleach inside the isolator. Check details of sample against the sample request forms.
Label samples with a unique lab identifier and arrange into batches of samples for processing. Samples are wrapped in two individually sealed bags, wiped down with bleach and after 10 minutes they can be moved to a second isolator where the nucleic acid extraction takes place.
Inside the second isolator (we had two, named “Kate” and “Wills”), carefully extract nucleic acid from an aliquot of the patient’s blood or swab. Run malaria tests if required. (This work is done with the help of a buddy to check every step is performed correctly and to record the various steps on the sample record forms.
Once the samples have been inactivated with extraction buffer and ethanol, wipe down the tubes with bleach and wait ten minutes before bringing them out.
(Working in the isolators is a skill on its own as due to the two pairs of gloves, one of which is similar to dishwashing gloves, you lose a lot of dexterity. Despite the fact that most of us had no experience working in an isolator, the team did a fantastic job and picked it up quickly.)
Bring inactivated samples out of the isolator and carry out final checks to ensure the inactivation times are correct. Extract nucleic acid on the bench.
Purify viral RNA genome from other things present in samples. This process takes ~40 minutes and the final product is a small amount of purified nucleic acid.
Coordinate with other team members to set up tubes containing the Mastermix so that they are ready to go as soon as the extracts are ready.
Once the extracts are ready, add to the Mastermix in a separate room and take the samples into the PCR room. Analyse the samples using the Polymerase Chain Reaction (PCR) on one of the three PCR machines (called ‘Alvin’, ‘Simon’ and ‘Theodore’).
The PCR takes just under two hours to complete, after which the results are analysed and checked by two members of the team. Complete the paperwork and enter the results into a database.
(Depending on where the samples had come from, the results would either be reported later that night or immediately phoned through to clinical staff. The typical turnaround times were 4-5 hours from sample reception to results, which – given the critical safety steps that had to be followed – was pretty quick.)
One of the team leaders to send out a report of the day to the various agencies involved.
(This “simply” entailed sending an email – yet it was one of many challenges we faced during a typical day. We had satellite based internet but it was somewhat temperamental and very slow. We also had mobile internet “dongles” but reception at the treatment centre was somewhere between poor and non-existent. I did, after an hour of snooping around, find a single spot in one tent where I could get a single bar 3G signal.) One particular evening it took almost two hours to send the report out due to these connectivity problems.)
The late shift team (2pm onwards) close down the lab at the end of the day (~10pm), cleaning out all the isolators (“BFG”, “Kate and Wills”), discarding all the waste, swabbing down the benches with bleach and generally trying to prepare the lab for the team in the morning.
Meet colleagues at the end of the day in the dining room of the hotel (Makama Lodge) for a chat and a drink.
(These periods were very important, not only for airing any issues that had come up during the day (practical or personal), but also for the overall morale of the team. Working in that environment with the same people for long periods of time can be quite stressful (kind of a lab-based “Big Brother” experience) so its essential the team has rest time together.)
We were all tired, missing our families and many were ill due to gastroenteritis. Despite this morale was always high. The saying “laughter is the best medicine” held very true. “Makeni Team One” was a fantastic bunch of people and they were always there to support each other. It was a real honour to have been part of the team.
A break over New Year is always a wonderful time to reflect on the past twelve months and think forward to the opportunities for the coming year. I’d like to take this opportunity to share some of my thoughts and express my hopes for the coming year.
Reflections on 2014
2014 brought with it the very sad loss of one of the truly great figures in global health and a good personal friend – Joep Lange – who was on flight MH17 that was shot down over Ukraine, along with a number of others attending the HIV Congress in Australia.
It was also the year we marked and honoured the memory of two other greats who in different ways contributed so much to the Wellcome Trust and to global health – Fred Sanger and Peter Williams.
From a health perspective the dominant issue of 2014 has been the on-going Ebola epidemic in West Africa. With over 20,000 confirmed cases and 8,000 deaths this is by a very long way the worst Ebola outbreak in history and its impact is being felt beyond Ebola itself.
My prediction is that the peak of the epidemic may be reached this month and as a result of the massive national and international efforts, the number of new infections will start to decline. The tail of the epidemic will continue for many months and I doubt if we will be able to declare the epidemic ‘over’ until late 2015 or into 2016.
The Wellcome Trust can be enormously proud of the role it has played at the forefront of the response to the epidemic. The Trust was one of the first to recognise that this epidemic was different to all previous outbreaks and the first to galvanise critical research in ethics, epidemiology, anthropology, social sciences, mapping, communication, diagnostics, anti-viral drugs and vaccines.
The fruits of this hard work are now being felt with the research supported by the Trust having all started and directly impacting on this epidemic and inevitable future epidemics of Ebola.
Thankfully there were a large number of positive events to counter the troubling news that so often dominates the news, such as the confirmation of major and sustained reductions in mortality from malaria (which the Trust has played a central role in).
It would be impossible to include here on all the remarkable Wellcome Trust activities of 2014, but a few personal highlights include our joint-funding of an independent review of antimicrobial resistance, the opening of ‘The Institute of Sexology’ at the Wellcome Collection, and having the honour of representing the Trust at the memorable Nobel ceremony to honour the work of John O’Keefe and his co-laureates May-Britt Moser and Edvard Moser.
We also celebrated the 25th anniversary of the Wellcome Trust-KEMRI Programme in Kilifi, Kenya, began the next phase in the development of the Hinxton campus with the Wellcome Trust Sanger Institute and European Bioinformatics Institute, and renewed our Institutional Strategic Support Funding. I also enjoyed answering questions posed by members of the online forum Mumsnet during a ‘live-chat’ about Ebola.
I’m really pleased that the annual results from our investment portfolio will enable us to continue to have a major impact on human and animal health, and we hope to give out an extra £1 billion in the next five years, as compared to the previous five year period.
We were also delighted to welcome two new members of the Board of Governors, Bryan Grenfell and Tobias Bonhoeffer, but one of my fondest memories of 2014 is of sitting in a hot steamy Sierra Leone hospital Skype-ing in to the Wellcome Trust Christmas party!
Looking forward to 2015
I hope 2015 will be the year when we bring an end to the devastating Ebola epidemic and put in place more robust global systems for responding to the inevitable future epidemics of Ebola and other (re-)emerging infections (including antimicrobial resistance).
There are many reasons to look forward to 2015 with real excitement. The fundamental change in our approach to funding, with a new focus on Strategy, Teams, People (with an emphasis on youth and diversity), Places, Resources and Seeds marks a major shift in the way the Wellcome Trust supports research.
I am very keen in 2015 to broaden and deepen our investment in people, identifying and developing talent and leadership both internally within the Trust and in our external community to give people the confidence, space and support to take us all to the next level.
The full “reopening” of the Wellcome Collection will be a huge event, the previews have already been stellar and the excitement within the Collection, the Trust and the community is palpable.
Our work in ‘Sustaining Health’ will gather momentum in 2015 as the initial awards bear fruit and the Trust team works to define how we can best contribute to this critical topic.
I am particularly looking forward to the joint research initiative with two other great European Foundations – the Volkswagen Foundation Germany and the Riksbankens Jubileumsfond Sweden. I am hoping this will help us reach out to continental Europe and broaden our international reach. In a similar vein, the visit with the Board of Governors to Denmark and Sweden in February, and contributing the World Economic Forum Davos, will also help us gain a perspective on how colleagues in other countries achieve real impact through research.
2015 will also mark the formal hand over of The Francis Crick Institute and the opening of the Sainsbury Wellcome Centre for Neural Circuits and Behaviour. It will also see the first awards made under the DELTAS scheme, which aims to develop research excellence in Africa.
We are hopeful that the UK parliament will vote through new regulations that will allow important work on mitochondrial donation techniques to continue, and enable the HFEA to issue individual licenses so that this research can benefit patients. We continue to support calls to ensure that EU data regulation maintains both data privacy and carefully managed exceptions to allow essential health research to continue.
I will continue to visit institutions in the UK and internationally to listen to our community and learn from their experiences – especially reaching out to places and disciplines we have not traditionally funded. I look forward to hearing more about everyone’s work and ideas for how we can do things even better in the future, and to engaging researchers to help frame our strategic priorities for the years ahead.
The Wellcome Trust is a unique and inspirational place to work. It’s creative, influential, quirky, and we are bringing about change that is making a real difference to people’s lives. I am very proud to be a part of it and very much look forward to the coming year.
Very best wishes for 2015 – Jeremy