My Work Experience at the Direct-to-Consumer Medical Testing Conference

Introduction from the Centre for Personalised Medicine

On the 5^th of May 2026, the Centre for Personalised Medicine hosted a one day symposium on direct-to-consumer medical testing. The event was held at St Anne’s College and organised by Sally Sansom, Francesca Dakin, Thea Perry, Anneke Lucassen and the wider CPM team.

The aim was to bring together different perspectives on this rapidly developing sector to identify the challenges and opportunities it raises for health services. Bringing together contributors from clinical practice, academia, journalism, industry, ethics, and regulation, the event featured presentations and discussions from:

• Professor John Powell: Professor of Digital Health, University of Oxford
• Deborah Cohen: Author, Journalist, Editor and Broadcaster; Senior Visiting Fellow, LSE
• Dr Helen O’Neill: Associate Professor in Reproductive and Molecular Genetics, UCL; CEO & Founder, Hertility Health
• Dr Sugha Murugesu: Obstetrics & Gynaecology Registrar / Medical Advisor, Hertility Health
• Mark Bartlett: CEO, StoreGene
• Dr Sharon Dixon: GP Partner and NIHR Doctoral Research Fellow
• Associate Professor Tim Child: Associate Professor of Reproductive Medicine, University of Oxford
• Associate Professor Dimitrios Koutoukidis: Associate Professor, University of Oxford
• Dr Rachel Horton: Research fellow at Centre for Human Genetics and clinical genetics ST6NHS Genomic Medicine Service
• Professor Anneke Lucassen: Professor of Genomic Medicine, Centre for Human Genetics and Director, Centre for Personalised Medicine
• Dr Alberto Giubilini: Senior Research Fellow, Uehiro Oxford Institute
• Professor Anthony Harnden: Chair, MHRA; Professor of Primary Care, University of Oxford
• Dr Joseph Burt: Head of Diagnostics and General Medical Devices, MHRA

Topics covered included digital health, clinical perspectives, fertility and hormone testing, genomics, nutrition, ethics, regulation, and social media, with speakers exploring how direct-to-consumer testing is reshaping healthcare experiences, patient pathways, health system boundaries, and wider public understandings of health. We will be sharing a full report on the day’s discussions in the coming months.

Among those attending was Grace Gould, a Year 12 student completing work experience with the Centre. Throughout the day, Grace helped support the event while also observing the talks and panel discussions firsthand. In the blog below, she reflects on the ideas, debates, and questions that stood out most to her. Her piece offers a thoughtful snapshot of how conversations about healthcare innovation can resonate with younger audiences and highlights the value of including emerging perspectives in discussions about the future of medicine and healthcare policy.

My Work Experience at the Direct-to-Consumer Medical Testing Conference

As part of my work experience with the Nuffield Department of Primary Care Health Sciences, shadowing Dr Francesca Dakin, I attended The Centre for Personalised Medicine’s (CPM) symposium – where Dr Dakin is a research fellow focused on direct-to-consumer (DTC) medical testing and personalised medicine.

Going into the day as a Year 12 student with more interest in healthcare policy and society than medicine itself, I expected to feel slightly out of my depth. However, despite the complexity of many discussions, the conference felt extremely welcoming and encouraged open debate between speakers and attendees.

I found myself genuinely fascinated by how broad the discussions became. They were not only scientific, but also ethical, sociological, technological, and political.

I started the morning helping set up the conference by organising name badges and welcoming attendees as they arrived. Throughout the day I was also asked to take notes and photographs for the conference review and my blog post, which encouraged me to engage much more closely with the talks and discussions. The event itself was extremely well organised, and during the breaks and lunch I had the opportunity to speak with professionals from a range of different backgrounds in healthcare, policy, and research.

Theme 1: Developments in Direct-to-Consumer Medical Testing:                                                            

The first theme explored how healthcare is rapidly changing through technology, AI, and digital innovation. The first speaker was John Powell, who discussed the “pace of change” within healthcare and how regulation often struggles to keep up with new technologies. One example which particularly stood out to me was the “Zapper”, a device from the 1990s which claimed to cure diseases such as cancer and HIV despite lacking scientific evidence. It highlighted how quickly medical products can spread without evidence when consumers are searching for reassurance or quick solutions.   

Deborah Cohen, an author and journalist who wrote the book “Bad Influence” was the next speaker. Her talk focused heavily on the role social media now plays within healthcare and how platforms such as TikTok and Instagram increasingly blur the line between health advice and advertising. She discussed ideas such as “diagnostic odysseys”, where people spend years searching for explanations for symptoms after feeling unheard within healthcare settings. One point that really interested me was her discussion around algorithms and how social media can create a constant feedback loop where users are repeatedly shown health-related content, encouraging self-diagnosis and over-analysis of normal bodily functions. It definitely made me reflect on how easy it is for social media to influence the way people think about their own health.

Helen O’Neill’s discussion on fertility testing and women’s health was also interesting. She explored how many women turn towards DTC testing because of long waiting lists and gaps within women’s healthcare. I was surprised to learn how recently women were properly included in the research studies used to determine clinical testing and how limited historical research surrounding women’s health has been. Her company’s development of “GYN-AI”, an AI-supported diagnostic tool focused on women’s health conditions, demonstrated how technology might improve access to healthcare and reduce pressure on overstretched systems.

Panel Discussion Reflection:

In the panel discussion (chaired by Sally Sansom) that followed, Mark Bartlett, argued that if the NHS does not begin integrating more direct-to-consumer healthcare technologies and utilising the wider healthcare market, it may “fall behind” globally within healthcare innovation. But opinions were divided on this with some suggesting that a publicly funded health service like the NHS cannot operate a competitive market without widening health disparities further. Others wondered whether greater collaboration between private DTC companies and public healthcare services could reduce pressure on the NHS.

Theme 2: Implications of Direct-to-Consumer Medical Testing for Clinical Practice and Patient Pathways

The second theme focused on how DTC testing may begin to affect relationships between healthcare professionals and patients, particularly as at-home testing becomes increasingly common. Tim Child, who specialises in fertility discussed the rapid rise in at-home fertility and hormone testing, as well as the increasing number of people turning to online healthcare information in search of explanations for infertility. He argued that “more testing can create more suspicion than certainty.” He explained how many people become fixated on finding a specific explanation or “problem” that can be solved, even when test results may not actually change treatment outcomes. This linked closely to wider concerns surrounding over diagnosis and unnecessary anxiety, particularly when people begin repeatedly testing themselves without proper clinical guidance.

Tim also raised concerns about the reliability of some at-home tests, especially when testing is not carried out under proper clinical conditions. This made me think more critically about how many DTC tests are marketed as highly scientific and accurate, yet factors such as pre-test probability, timing, storage, and testing environments can significantly affect results.

Dimitrios Koutoukidis’ explored this theme further, with an interesting discussion surrounding DTC gut health and nutrition testing. He questioned how scientifically reliable some gut microbiome and food intolerance tests are, explaining that there is still no universally agreed definition of a “healthy” gut microbiome. This introduced another important debate running throughout the conference: just because technology allows us to measure something does not necessarily mean the results are clinically meaningful or useful.

Panel Discussion Reflection

The second panel discussion (chaired by Francesca Dakin) focused heavily on how DTC testing may begin to change the relationships between doctors and patients. Some panel members argued that AI, social media, and increased access to health information can encourage patients to become more informed and make consultations more conversational and collaborative.

However, others raised concerns surrounding situations where patients strongly trust DTC test results even when subsequent gold standard testing contradicts them. I found this discussion especially thought provoking because it highlighted how healthcare professionals may increasingly have to manage not only illnesses themselves, but also patients’ interpretations of online health information and private testing.

Theme 3: Ethical, Philosophical, and Regulatory Considerations of Direct-to-Consumer Medical Testing

The final theme focused on the ethical and regulatory challenges surrounding DTC healthcare. Many of the discussions became much more philosophical than I had expected. Joseph Burt, alongside Anthony Harnden, particularly explored the regulatory difficulties surrounding DTC healthcare and the challenge of balancing innovation with patient safety within increasingly commercialised digital healthcare spaces.

Anneke Lucassen linked genetics and personalised medicine. One idea I found interesting was the argument that genetic information does not exist in isolation. Genetics alone cannot fully predict health outcomes because environmental and social factors also play a huge role. This linked closely to wider concerns around inequality and access to healthcare, as people already better served by healthcare systems are often overrepresented in medical data.

The ethical discussions also explored the issue of commercialisation within DTC healthcare. Because companies are ultimately businesses, there can be tension between selling products and fully communicating the limitations of those products to consumers. This raised important questions about responsibility, regulation, and what ethical healthcare should look like in increasingly digital and commercialized spaces.

Panel Discussion Reflection

The final panel discussion (chaired by Anneke Lucassen) focused more on regulation and misinformation online, particularly surrounding influencers sharing incorrect medical advice across platforms such as TikTok and Instagram. One question raised was how regulators could realistically manage such a huge volume of online health content. Rather than arguing for complete censorship, several speakers instead emphasised the importance of education and encouraging accurate medical information online. I found this discussion especially relevant because social media has become such a major source of healthcare information for people in younger generations (like me), meaning influencers now hold significant power in shaping public understanding of health and medicine.

Before attending the conference, I mainly associated personalised medicine and DTC healthcare with things such as at-home DNA kits or fitness trackers. However, the day completely changed my perspective and opened my eyes to how broad the world of healthcare actually is beyond simply becoming a doctor or working directly within medicine. I found it really fascinating to see how healthcare is increasingly shaped not only by scientists and clinicians, but also by technology, AI, social media, business, ethics, and public policy.

What I found especially valuable was how many of the discussions extended far beyond science alone. I enjoyed seeing debates around regulation, misinformation, inequality, and the influence digital platforms now have on the way people understand their own health. It definitely made me think more critically about the relationship between healthcare, technology, and society, particularly as DTC testing continues to become more common.

Alongside the conference content itself, I also learnt a lot from observing how a professional conference is organised and run. The event felt extremely well structured and welcoming throughout the day, and it was interesting to see how discussions, panels, networking, and audience engagement were managed so smoothly. Overall, attending the conference was one of the most engaging parts of my work experience so far and gave me a much broader understanding of personalised medicine and the future challenges and opportunities surrounding healthcare innovation.

Grace Gould

Who will make personalised medicine work?

The CPM was delighted to host Maxine Mackintosh as one of its first affiliate members. In this blog Maxine makes some very pertinent insights about the conditions needed to make personalised medicine work. Maxine has now moved across the pond but we do hope she will return to work with us at the CPM at some point in the future!

Personalised medicine is often framed as a scientific frontier, but it is also an evidential, organisational, and ethical one. The question is no longer only how to generate better science, but how to recognise, test, and use new forms of evidence in real systems, and to do so in ways that are trustworthy and equitable. As medically relevant evidence increasingly emerges beyond traditional academic settings, the people able to move between academia, implementation, and public legitimacy become evermore important. They are often the ones helping to make rigour operational, turn equity into design choices, and build trust in how innovation is introduced and governed.

I am probably predisposed to notice this, having spent much of my career so far trying, not always neatly, to move across different roles, disciplines, and perspectives. Trying to bridge those worlds has made me more aware of how much sits between them, and how difficult it can be to work well in that space. But the broader value of cross-sector, interdisciplinary, boundary-spanning work has been increasingly on my mind in recent years: through a Sciana Fellowship and its emphasis on systems leadership for health, recently reading a very validating book called Range which celebrates generalists in a world of specialists, and through a BMJ Leader piece by a friend and colleague making the case for managerial academic career (in essence, for people who can speak implementation and operations as fluently as they speak academia and evidence). That feels especially timely in personalised medicine, where the task is not to loosen standards, but to make sure rigour moves with evidence into the places where medicine is now learning, and that there are people able to steward that well.

Why this matters now

Part of the reason this matters more urgently now is that the environment of evidence itself is changing. Evidence-based medicine was built for a world in which evidence was relatively scarce, expensive to generate, slow to accumulate, and largely produced in a limited number of formal settings. Academic centres ran studies, journals published them, guideline bodies synthesised them, and clinicians then applied the results to patients. That architecture brought enormous gains, and still does. But it is no longer the only world medicine inhabits.

Patients can now generate continuous physiological and behavioural data through wearables, sensors, apps, home testing, and patient-reported measures. Clinicians work within electronic records that contain large volumes of routine outcome data. Digital platforms can vary interventions at scale and learn from the results. Information from daily life, behaviour, environment, service use, and treatment response can increasingly be linked together. AI systems can interrogate those data at a speed and scale that no individual clinician or researcher could manage unaided.

That does not mean every new data point is meaningful, nor that every new data source deserves the status of evidence; assuming so has caused all manner of problems. But it does mean that clinically relevant insights are increasingly emerging outside the traditional academic centre. That matters not only because it changes where evidence comes from, but because it raises harder questions about who gets counted, who is left out, and who is equipped to judge what should shape practice.

Why the old division of labour is becoming harder to defend

What is becoming harder to ignore is that some of the people best placed to improve healthcare are still not the ones most clearly supported to produce knowledge about it. Those working close to delivery, or using services, often see first how systems behave under pressure: where pathways fail, where evidence stalls, where incentives distort decisions, where trust is won or lost, and what it actually takes to make innovation usable. Yet they are still too often cast as implementers of knowledge produced elsewhere, rather than as contributors to the generation, interpretation, and translation of knowledge itself.

The reverse problem exists too, as academic work can remain oddly insulated from the operational conditions in which it will eventually have to function. In personalised medicine, that separation becomes harder and harder to defend. The old distinction between those who generate knowledge and those who merely apply it looks increasingly unconvincing. If the ultimate goal is to improve health for patients, service users, and citizens, then healthcare has to build far stronger routes for people in real-world roles to become more academically grounded, while also expecting academic work to remain more answerable to practice.

Personalised medicine makes the problem hard to ignore

Take genomics, often held up as one of the great scientific promises of personalised medicine. It is certainly that, but it is also a useful reminder that discovery alone is rarely enough. Even one of the most scientifically advanced areas of personalised medicine succeeds or fails not only through breakthroughs in the lab, but through pathway design, workforce readiness, interoperability, commissioning, and trust. In other words, discovery is only part of the story.

The NHS Genomic Medicine Service offers a good example in that the scale of testing and the expansion of the National Genomic Test Directory are significant achievements. But the less glamorous work matters just as much, which lies in standardisation, data flowing across systems, and innovation infrastructure able to support adoption in everyday care. A review of integrating genomic medicine into mainstream NHS care made similar points. The barriers to real clinical utility are often as practical and systemic as they are scientific: referral-dependent pathways, unclear eligibility criteria, gaps in workforce capability, cost pressures, unequal access, and ongoing questions around data management and privacy.

Those are not simply operational obstacles, they are also issues of fairness, confidence, and public legitimacy. Anyone who has worked in or alongside delivery will recognise some of that; I certainly do from my own time at Genomics England, where the scientific promise was always inseparable from the human, technical, and organisational capability around it.

The people we need go in both directions

We need more people in operational, managerial, and service-facing roles to be supported to become more academically grounded: more confident in evidence, more fluent in method, and better able to distinguish a promising signal from a justified change in practice. As that BMJ Leader piece argued, many managers already bring research literacy, operational knowledge, and system-level insight, but lack the formal structures, incentives, and progression routes that are much more clearly established for clinical academics. The point is not simply that managers should be “allowed in” to academic space, but that healthcare underuses the people who often understand the system best.

The movement has to go the other way too, of course. We also need more academics in personalised medicine whose work is shaped earlier, and more seriously, by the conditions of implementation. A method, biomarker, genomic insight, or data tool may be scientifically compelling and still fail in practice if it does not reckon with workflow, time, incentives, governance, interoperability, or the distribution of expertise across services. It is one thing to understand that in theory, and quite another to feel the pressure of delivery itself, which is always, among other things, humbling.

These boundary-spanning people are also often the first to spot the early signals of inequity. Because they work across worlds, they are frequently the ones who notice when certain groups are missing, when design choices may be reinforcing unfairness, when trust is being assumed rather than earned, and when technically impressive work is at risk of losing social legitimacy. That reciprocity is what I find most compelling: the possibility of building more people, roles, and habits that allow evidence and implementation to shape one another earlier and more honestly.

So what should we take from this?

The most practical implication is that personalised medicine needs to get much better at recognising and backing the work that sits between established categories. Too often, the people trying to connect evidence to delivery, operational reality to academic method, or technical promise to public interest are left to do that work by instinct, goodwill, or sheer persistence. If we think they matter, then they need more than recognition. They need clearer routes, stronger backing, and institutions willing to treat that work as serious.

I feel very lucky to have often existed in environments where this kind of work was possible. But it has become clearer to me over time that this has not been the experience of many others. That matters, because if this work depends too heavily on energetic individuals or unusually supportive settings, then it remains fragile.

A second implication is that the goal should not simply be better collaboration between separate groups, but more shared literacy across them. People in real-world roles should be able to engage more confidently with evidence, method, and uncertainty. Academics, in turn, should be expected to stay closer to the realities of implementation, service design, and public trust. The point is not to collapse every boundary, but to make those boundaries less limiting than they often are now.

These people also tend to act as early course-correctors. They can see where a pathway looks elegant on paper but awkward in practice, where a promising innovation is subtly excluding some groups, or where confidence is being assumed before it has really been earned. That kind of perspective is what allows personalised medicine to mature well.

And perhaps that is the real test. Not simply whether personalised medicine is producing more science, more tools, or more technical sophistication, but whether it is building the people, habits, and institutions that allow those advances to be used wisely, fairly, and with enough humility about what real-world care actually demands.

What the Centre for Personalised Medicine can contribute

Perhaps that is why spaces like the Centre for Personalised Medicine matter so much. Not because they have all the answers, or because every difference in perspective can be neatly resolved, but because they can act as a kind of third space: somewhere researchers, practitioners, patients, and publics can come together outside the usual constraints of role, discipline, or institutional hierarchy. In spaces like that, people can sometimes speak a little more openly, ask better questions, and encounter one another first as humans rather than as job titles or forms of expertise.

For me, that is one of the most valuable things a centre like CPM can offer. Not simply a platform for excellent research, but a place where ideas can be tested against practice, where practice can be more firmly grounded in evidence, and where relationships of trust and curiosity can develop across boundaries that too often stay fixed.

If personalised medicine is to mature well, it will be judged not only by what it discovers, but by whether it can build the people, cultures, and institutions able to carry those discoveries into care fairly. It will need more spaces like CPM: places that do not flatten difference, but make it easier to work across it with honesty, humility, and purpose.

Maxine Mackintosh

Centre for Personalised Medicine Art Competition 2025-26

Earlier this year, the CPM ran an art competition asking UK students in Years 7 to 9 (approx. 11 to 14 years old) to send in art exploring the meaning of ‘personalised medicine’ and showing us what it meant to them. You can watch a video introducing the competition here.

We were thrilled to receive almost 100 entries, which were judged by Dr Rachel Horton (CPM Affiliate Member), Francesca Dakin (CPM Junior Research Fellow), Honor Davies (Oxford University Personalised Medicine Society), Dr Jason Waite (History of Art, St Anne’s College) and Dr Naomi Marshall (Clinical Ethics, Law and Society group, University of Oxford).

This blog showcases the artwork of our outstanding winners and finalists.

Winner: individual category

By Frida, age 14, Fallibroome Academy, Macclesfield

Frida explained that her artwork ‘represents personalised medicine as layers of digital tabs made using plexiglass and a doctor and patient on either side. Each layer representing information that helps the doctor understand the patient as an individual. The stacked tabs show that medical decisions are made using many factors. I used these tabs to show that personalised medicine means building care from many factors. Using this information helps doctors choose safer and more effective treatments to tailor care for each individual patient.’

The judges thought this was a brilliant and imaginative concept: the idea of a doctor having to ‘look through’ layers of information before finally seeing the patient was very compelling. We really enjoyed the use of layered panels, adding a physical depth that cleverly mirrors the concept of layered data. Frida’s entry really stood out for its creativity, originality, and clear communication of a complex idea.

Joint runner-up:

By Nyah, age 12, Channing Senior School, London

Nyah described how her artwork ‘summarises what I know about what personalised medicine is and how it produces a more accurate diagnosis by using your unique genetics, lifestyle, and clinical data to tailor healthcare.’ She wanted her artwork to ‘tell the story/journey of somebody who has decided on having personalised medicine and show what the process can be like. I have depicted a young girl receiving a sample of her medicine. She had to attend multiple appointments and the scientists also had to perform many tests. DNA plays a vital part in how personalised medicine is designed and so I also wanted to spotlight this. I thought about what DNA is made from and what it does for medicine. It is represented in my painting as a staircase with family members watching from it.’

The judges thought this was a beautiful and powerful entry that clearly reflects a great deal of effort and thought. We were really impressed by how the composition cleverly brings multiple elements together, demonstrating impressive artistic skill along with a strong level of research and understanding.

Joint runner-up:

By Millie, age 14, Beckfoot School, Yorkshire

Millie said, ‘my picture is a charcoal drawing of an eye displaying the chemical structure of Faricimab, a medicine used to treat age related macular degeneration. The background shows the type of vision that people with AMD can have, overlaid with an Amsler chart, which people can use at home to see whether their eye disease is deteriorating or staying the same. Faricimab isn’t suitable for everybody, for those who can use it, it’s sight saving and the impact it can have is amazing!’

The judges loved how Millie’s detailed charcoal drawing of the eye draws the viewer in, while the inclusion of a real drug structure and the distorted background clearly communicate how personalised medicine targets specific conditions like vision loss. We thought Millie’s decision to include the Amsler chart and visual distortion was especially effective in helping the viewer understand what patients experience, not just the treatment itself.

Highly commended:

By Gagan, age 13, Sutton Coldfield Grammar School for Girls, West Midlands

Gagan wrote that ‘the hands holding prescription bottles acts as a metaphor for individuality as the labelled medicine highlight how medical treatment is tailored to individual needs rather than a single “perfect” solution. The circular composition symbolises equality and humanity, while the imperfect spacing reflects how people do not fit neatly into scientific categories, and should not be defined by data.’

The judges thought that Gagan’s artwork was beautifully artistic and very thoughtful, conveying how people’s different needs and priorities might influence prescription.

Highly commended:

By Ottilie, age 13

Ottilie’s artwork is titled Tailored Treatments. She wrote ‘I have drawn it in an abstract style as I think this best represents the uniqueness of the individual and how care should be tailored to their needs. The image I created is composed of DNA double helix with medical equipment interspersed in its structure to reflect the increasing ability of personalised medicine to treat people at a genetic level. The lines that form the person are smooth and flowing, emphasising the fact that we are not just DNA but unique individuals that need kindness and care when we are ill. I used bold colours so that every person should be seen and stand out.’

The judges really enjoyed this bold and original artwork, and thought it had a strong artistic identity. The abstract style of this piece was really striking and it was clear that a lot of thought had gone into the details. We thought it showed mature thinking about how art and meaning connect.

Highly commended:

By Darcie, age 13, Didcot Girl’s School, Oxfordshire

Darcie’s artwork was based on a loved one’s experience within the medical world, and her personalised medicine. She wrote that she ‘wanted this artwork to highlight the struggles she goes through but also what all the doctors do to keep her healthy. Displayed is some of the medication used e.g. the inhaler and montelukast. She has monthly injections to help her with her asthma, hence the needle. The different shades of the lung show how quickly someone’s state can change with asthma, all the things that can cause complications within the lungs.’

The judges loved this very raw and personal account of personalised medicine: we thought it was a strong and thoughtful interpretation that clearly shows how medicine is tailored to one person’s needs. We thought the personal connection made this piece very powerful, bringing empathy and emotion into science.

Highly commended:

By Tiya, age 13, St Helen’s School, Northwood

Tiya’s artwork ‘represents personalised medicine as something unique and individual … The doctor’s palette, at the centre, symbolises how doctors “paint” medicine by combining care, treatment, and data, to meet a person’s healthcare needs. Surrounding the palette are pots of paint, containing boxes of medication, along with blister packs, instructions, and wrappers, reflecting the reality of managing health daily. The lungs at the centre represent living with asthma. A paintbrush tipped with an inhaler cap blends a trail of colours towards the heart, showing how treatments work together to support health. The ECG strip and heart represent monitoring and protection, while the words “breathe” and “strength” highlight what personalised care allows. In the background, graffiti formed from my name and the phrase “Express Yourself” shows that identity, creativity and self-expression are essential parts of healthcare.’

The judges loved the individuality of this piece. We really liked the concept of the doctor’s palette: it was such an evocative way of thinking about the delivery of personalised care. We were also impressed with Tiya’s repurposing of waste materials to create this powerful artwork.

Highly commended:

By Ace, age 13, Holland Park School, London

Ace explained ‘I drew this to show the difference between medicine in the past and now. During the war, nurses treated everyone the same, but today medicine is moving towards treatments based on each person’s own DNA and conditions. The idea is to show how healthcare is changing from one-size-fits-all to something more personal.’

The judges thought that this was a visually compelling and original piece, which cleverly brought in historical contexts around medicine and situated personalised medicine within a changing world.

Highly commended:

By Ahsaan, age 12, Magdalen College School, Oxford

Ahsaan explained that his artwork is ‘based on the Vitruvian man by Leonardo Da Vinci that signifies the ‘ideal proportions’ of the human form. I have characterised the Vitruvian man in my artwork, that shows the ideal proportions of personalised medicine specific to our needs and requirements. Depicted around the illustrated figure are the three values that I think make up personalised medicine for me. Predictive, Preventive and a Personalised Treatment. These values all combine and help create a personalised medicine for our individual health which is also what my version of the Vitruvian man is.’

The judges thought this was a fantastic reinvention of the Vitruvian man. We really enjoyed how it drew a strong parallel between Da Vinci’s notion of ideal human proportions and medicine tailored to the individual.

Highly commended:

By Umara, age 14, Guildford High School, Surrey

Umara’s artwork is entitled One Body, One Story. Umara wrote ‘my artwork shows the human body as a jigsaw puzzle, where every person appears whole, but in reality everyone is missing a different piece. The missing piece, (the heart) represents the personal story inside us like our genetics, experiences, emotions and health. Personalised medicine exists to find that missing piece so treatment fits the person, not just the illness. No two bodies are the same, and no two stories are the same.’

The judges thought the use of puzzle pieces was a great concept and very relevant, especially the idea that personalised medicine involves finding ‘missing pieces’.

Winner: group category

By Cleo & Sadie, age 12, Channing Senior School, London

Cleo and Sadie explained ‘our artwork shows how personalised medicine can affect people’s lives, but not just the lifespan, we tried to capture how medicine can affect your social life, how it can really interfere with your friends, family and education.’

The judges enjoyed how the hourglass brought in the idea of personalised medicine being delivered and experienced over time. The included pictures were very thought-provoking, bringing in a mixture of conventional medical symbols (stethoscope, medication, pills) together with pictures which alluded to the wider contexts of a person’s life. We thought it was a great concept illustrating how personalised medicine might bring both these aspects together across a person’s lifecourse.

Many congratulations to our brilliant winners and finalists, and thank you to everyone who entered or supported the Centre for Personalised Medicine 2025-26 Art Competition. As always it’s been a delight to see the incredible talent and effort that young people have put into these powerful pieces.

We hope to run the competition again next year, so please keep an eye on our website for the details!

When Genetics Becomes Personal: Rare Disease, Family, and Genomic Medicine – Reflections from a Centre for Personalised Medicine Research Fellow

My name is Sally Sansom. I’m a Research Fellow within the Centre for Personalised Medicine at St Anne’s College, and I’m also in the final year of my PhD within the Health Economics Research Centre at the University of Oxford. My work focuses on genomics, rare conditions, and how we decide whether new genomic medicine technologies improve the lives of patients and caregivers, and represent good value for money for health systems like the National Health Service (NHS).

But the reason I work in this area is not only academic, it’s also deeply personal.

A personal beginning

I’m the eldest of three girls. My middle sister, Stephanie, is eighteen months younger than me. When we were growing up, I slowly became aware that she was different. She never said her first word. She barely slept. She had seizures. And, when we were out in public, people stared. I would glare back, wanting to protect my little sister and my family, without really understanding why she was different, or why she wasn’t growing up like I was.

When Stephanie was two years old, she was diagnosed with Angelman syndrome, which is a rare, genetic, neurodevelopmental condition. For the first time, we had a name for what Stephanie, and we, had been living with.

People who haven’t encountered Angelman syndrome often find it difficult to picture what this looks like in everyday life. Stephanie is today what I sometimes describe as an adult-sized eighteen-month-old. She has never spoken. She isn’t toilet trained. She struggles to safely walk independently. And she needs lifelong, around-the-clock care. As a child, all I really understood was that Stephanie needed much more help than other children, and that this help would always come from our parents, and over time, from me and my youngest sister.

Finding meaning through genetics

For me, Angelman syndrome didn’t just explain Stephanie. It also gave me a framework for understanding the world. This became particularly clear to me when I was fifteen years old, sitting in science class.

I remember being handed a piece of paper with forty-six squiggly lines printed on it. Each line was a slightly different length, with a different pattern of dark and light bands. We were asked to cut them out and arrange them into height order. Slowly, it became clear that the squiggly lines weren’t all different, they belonged in pairs. Twenty-three pairs, to be exact.

Our teacher explained that these squiggly lines were chromosomes, and that they were made up of the genetic material (or DNA) that makes us who we are. Every person’s genetic material is different, and that’s why every person is different.

I looked at the pair of chromosomes labelled “15”, and suddenly something clicked. One tiny error, in one tiny section of just one of those chromosomes, answered the question I had been asking for years: why is my sister different?

Genetics gave me a way of understanding how Stephanie came to be, what her future might look like, and how I might be able to help her. It’s why I studied genetics in my undergraduate degree, and later why I moved into health economics: because scientific discoveries, like genomic medicine, can only change lives if they move from the laboratory, through clinical testing and evaluation, and into routine healthcare.

Genomics and gene therapies

I like to think of our DNA as the architectural plans for a house. Every cell in our body contains a complete copy of those plans. They are extraordinarily detailed, and they describe how the house should be built, how it should function, and how it should be maintained over time.

Genome sequencing is the process of carefully reading those plans, letter by letter. It allows us to identify when a single letter has been blurred or damaged, when an instruction is ambiguous or incomplete, or when an entire page is missing. For rare conditions in particular, genome sequencing has transformed the process of obtaining a diagnosis. It can bring clarity after years of uncertainty, and can provide a foundation for research into future treatment options.

However, simply reading the plans and identifying the problem doesn’t fix the house. This is where gene therapies come in.

Gene therapies are often spoken about as if they are one single thing, but in reality, they are a broad family of approaches. What they share is the aim of changing the genetic material within our cells, or how it is used, rather than simply treating symptoms.

Historically, when people first talked about gene therapy, they were usually referring to gene replacement therapies. These involve delivering a working copy of a gene into cells that, for whatever reason, are missing this gene, or their copy of the gene is non-functional. In house terms, this is like inserting a missing page into the plans. This approach works best when a gene is completely absent or non-functional, and when the replacement gene is small enough to be delivered.

These types of therapies have already transformed care for some rare conditions. One example in the United Kingdom (US) is Luxturna, which treats a form of retinitis pigmentosa, a rare inherited condition that causes childhood blindness. By delivering a working copy of the gene directly to retinal cells, Luxturna can restore functional vision in patients with just one injection per eye within their lifetime.

But gene replacement therapies are only one option, and they are not suitable for every condition.

A second type of gene therapy focuses on gene regulation. In these cases, the gene is present in the cells, but it isn’t active enough or it’s too active. So, rather than adding a new gene, these therapies aim to increase or decrease the activity of an existing gene. Returning briefly to the house analogy, this is less like adding a new page and more like reinforcing an existing structure.

A third type of gene therapy involves gene silencing. Sometimes the problem isn’t that the gene is missing, or is over- or under-active. Sometimes the problem is that the gene is producing something harmful to the cells. In these cases, the goal is to stop the gene from being used by these cells completely.

More recently, there has been growing interest in a fourth type of gene therapy, involving gene editing. These approaches use molecular tools to make very precise changes to the genes already within our cells. So, rather than adding, regulating, or down regulating genes, gene editing aims to correct the underlying error.

Angelman syndrome illustrates why having this range of approaches matters. The gene involved in this condition is relatively large, and the most commonly used delivery systems for gene therapy can only carry small amounts of genetic material. This means that gene replacement is more challenging. However, it is still thought to be possible, and the first person with Angelman syndrome was dosed with the first gene replacement therapy for this condition in an early-stage clinical trial late last year.

In addition to gene replacement therapies, researchers are also exploring gene regulation therapies for Angelman syndrome. These are thought to be promising because individuals with Angelman syndrome often have a functional copy of the gene present within their cells that is silenced, so these approaches are looking at methods for turning this gene back on.

An important consideration is how gene therapies are delivered. Some are given directly into the body, for example into the bloodstream or into the fluid around the brain and spinal cord. Others involve taking cells out of the body, modifying them in the lab, and then returning them to patients’ bodies. Some approaches are designed to be given once, with effects that may last many years or even a lifetime, while others may require repeated dosing. Each of these choices has implications for safety, feasibility and acceptability, and cost-effectiveness.

Some gene therapies are already being used in the UK for rare conditions. In addition to Luxturna, another example is Zolgensma, which is used to treat spinal muscular atrophy, or SMA. This therapy replaces a missing gene in very young children and can dramatically alter the course of this condition that was once almost universally fatal in early childhood.

Why evaluation matters

These advances are extraordinary, but they also raise difficult questions. Many gene therapies are extremely expensive. Some are given only once, with effects that are intended to last a lifetime. However, the benefits may take years to fully emerge, and the long-term risks are still being studied, raising important questions about safety, durability, and unintended consequences, particularly when changes are permanent.

This is where my work sits. My research focuses on how we evaluate genomic tests and gene therapies. How do we measure whether they improve lives? How do we capture outcomes that matter, not just changes seen on scans or in lab tests, but changes in communication, independence, and functioning? How do we account for the impact of these therapies on caregivers? And how do we decide whether these therapies represent value for money for the NHS, given resources are limited and needs are many?

For rare conditions, these questions are particularly important. Conditions like Angelman syndrome affect a relatively small proportion of the population, but their impact on the quality of life of patients and caregivers is profound. Parents often have to reduce or give up paid work. And, siblings may take on caregiving roles. These effects extend far beyond individual patients, and can shape family life for decades. Traditional economic evaluation methods do not always capture this full picture very well.

That is why my work focuses on patient- and caregiver-reported outcomes: listening carefully to patients and families, and ensuring that the questions we ask reflect what matters to them, and to their loved ones with a rare condition. It also means being honest about uncertainty. These therapies are promising, but they are not simple fixes. Timing matters. Effects vary between individuals. And, long-term follow-up is essential.

When I think about Stephanie, I often wonder how things might have been different if some of today’s tools had existed when she was born. I feel real hope when I look at the pace of progress. I also feel a strong sense of responsibility to ensure that the widespread excitement about gene therapies is matched by robust evidence, so that patients and families are not offered false promises, and so that a public health system like the NHS can use its limited resources wisely.

So, if there is one thing I hope readers take away, it is this: genomic medicine is creating genuinely exciting possibilities for people with rare conditions and their families. But those possibilities must be accompanied by rigorous research and evaluation, thoughtful decision-making, and a clear focus on outcomes that matter.

References

A. Schambach et al., “A new age of precision gene therapy,” The Lancet, vol. 403, no. 10426, pp. 568-582, 2024, doi: 10.1016/s0140-6736(23)01952-9.

E. James. Foundation for Angelman Syndrome Therapeutics (FAST). Introduction to Gene Therapy. (2025). Available: https://www.youtube.com/watch?v=Q4VcMmJCWU8.

Foundation for Angelman Syndrome Therapeutics (FAST). “The State of the Drug Development Pipeline.” Foundation for Angelman Syndrome Therapeutics (FAST). Available: https://cureangelman.org/current-pipeline.

N. Vokinger, C. E. G. Glaus, and A. S. Kesselheim, “Approval and therapeutic value of gene therapies in the US and Europe,” Gene Therapy, vol. 30, no. 10-11, pp. 756-760, 2023, doi: 10.1038/s41434-023-00402-4.

M. F. Drummond et al., “Analytic Considerations in Applying a General Economic Evaluation Reference Case to Gene Therapy,” (in eng), Value Health, vol. 22, no. 6, pp. 661-668, Jun 2019, doi: 10.1016/j.jval.2019.03.012.

Health Inequalities & Ethnicity in the NHS Genomic Medicine Service: Constructing Pathways to Greater Equity

On 9th January 2025, we celebrated the creation of a new partnership between the University of Oxford and two Genomic Medicine geographies, South East and Central & South to generate evidence and design the solutions needed to tackle some of the inequalities and barriers that prevent genomic medicine being equally accessible to all. Funded by the NHS Race & Health Observatory, we will undertake a research and engagement programme over the next 15 months to understand the complex socio-cultural dynamics that constitute ethnicity and their implications for capturing genomic diversity.

The launch meet of this partnership was hosted at the Centre for Personalised Medicine, St. Anne’s College, University of Oxford. At the event, Dr Veline L’Esperance, Senior Clinical Advisor at the NHS Race and Health Observatory, highlighted the importance of this project in foregrounding the concerns of minority ethnic communities. She further pointed out the need for addressing public mistrust in healthcare services. Prof Anneke Lucassen, Director of the Centre for Personalised Medicine at the University of Oxford, underlined how collaborative research, involving communities and professionals in co-designing recommendations, is a necessary pathway in ensuring equitable healthcare. Dr Frances Elmslie, Clinical Director for the South East Genomic Medicine Service Alliance reiterated our commitment to better understand where disparities exist in the delivery of genomic medicine services and explore measures to eliminate them. Dr Nishtha Bharti, postdoctoral research fellow with the Clinical Ethics, Law and Society group at the University of Oxford shared initial research findings from her study exploring healthcare professionals perspectives on the challenges that arise from the varied and intersectional aspects of conceptualising race, ethnicity, and ancestry in genomics.

Dr Shwetha Ramachandrappa, Consultant in Clinical Genetics at Guy’s and St Thomas’ NHS Foundation Trust, lead a roundtable discussion with a diverse group of patient representatives, healthcare professionals and researchers. Dr Ramachandrappa shared her experience of working with Bangladeshi and Pakistani communities and emphasised the need for treating community members’ voices sensitively, so that research findings reflect their authentic perspectives. Philandra Costello, Lead Nurse at NHS Central and South Genomic Service Alliance discussed how poor translation of healthcare material and absence of suitable interpreters could undermine a project’s success among ethnic minority groups.

Prof Eamonn Sheridan, Medical Advisor to the NHSE Genomics Unit stressed the importance of utilising appropriate language in equity initiatives and the need to avoid terms like ‘hard-to-reach communities’, opting instead for ‘communities that are not heard’. The round table discussion also benefitted greatly from the inputs of genetic counsellors, clinical scientists and pharmacists who shared the challenges they face in specialised medical environments and their efforts in navigating those challenges. Representatives of various charities such as Unique Community and Alstrom Syndrome UK further contributed to a rich conversation about encouraging cultural competency, securing transparency and building long-term trust in healthcare delivery and research.

We aim to reflect on these discussions and combine them with our experience in public engagement, collaborations with underserved communities and academic rigour to explore healthcare professional, patient and public perspectives on the challenges of improving equity in genomic care. We will use this information to devise a series of practical recommendations to disseminate through professional networks and into clinical and research practice. This work will pave the way for larger scale efforts to improve inclusivity within the genomic medicine service. The next event bringing together diverse interest-holders and the collaborators in this partnership will take place in January 2026.

Thinking Outside the Box: Navigating Ethnicity in Genomic Medicine

As part of CPM’s collaboration with the South East and Central & South Genomic Medicine Service Alliances, funded by the NHS Race and Health Observatory, we hosted an event in June 2025 that brought together:

• members of Patient and Public Involvement and Engagement (PPIE) groups
• representatives of patient support organisations,
• healthcare professionals, and
• genomic laboratory scientists

We explored how identity descriptors, such as ‘ethnicity’, are used in healthcare, with a focus on genomic medicine. Genomic medicine has two reasons to be interested in  identity descriptors:

• to monitor access to services and ensure that all groups have the opportunity to benefit from them, and
• to support the interpretation of genomic data, since the ancestral origins of a person influence the patterns of variants in their genetic code.

Our research with NHS consultants, scientists and nursing teams has suggested that identity descriptors can be challenging to use in practice. This is partly because it can be difficult to know how to ask the question; how to record the information given; and then to use it appropriately for variant interpretation. The latter in turn is difficult since ethnicity is a social construct that incorporates so much more than genetic ancestry. It can also mean different things to different people. When we ask someone about their ethnicity, they might think of their place of birth or their place of upbringing, their nationality, culture, race, or even religion. The same label can mean different things in different places and people’s identities are often more complex than any drop-down menu can capture (as we explain in more detail in our podcast).

Using a method called ‘public switching’, our aim for this event was to hear directly from public participants, particularly patients and support groups with a wide range of experiences, to understand how ethnicity classifications operate in practice. Public switching brings diverse public voices into the earliest stages of shaping solutions and challenges top-down ways of tackling complex social problems (Dunlop et al., 2023). We presented some perspectives from healthcare professionals’ from our research to prompt participants to reflect on their own experiences with ethnicity in clinical settings and to understand how such data collection might be improved. Ahead of the day, we provided an orientation pack to the participants, outlining some of the key challenges around how ethnicity is asked about and recorded.

In the first half of the day, participants explored inclusive ways of asking about and recording ethnicity and co-created questions that were then shared with a panel of scientists, healthcare professionals and policy experts later in the day.

Session 1: Buttons, boxes and real-world dilemmas

We began with a ‘button exercise’. Participants chose a button that represented an aspect of their identity and explained its significance. This opened early conversations around self-perception and diversity.

Next, groups explored personal and collective experiences using two activities:

1.  Using cardboard cubes, participants wrote down the various labels they had received in healthcare settings, how those labels made them feel and what might be missing from those descriptors. These cubes captured a wide range of lived experiences: being stereotyped, mislabelled, dismissed or boxed into inaccurate categories. Participants shared feelings of mistrust linked to historical legacies and frustration at inaccessible or assumption-driven systems. They also reflected on the double-edged nature of labels: they can sometimes validate and connect, but they can just as easily exclude or harm.

2.  Working in groups, participants then discussed a real-world healthcare scenario, raising questions about the ethics of categorisation, whether identities should be chosen from a list or written in freely, and how political sensitivities, confidentiality and consent can be properly addressed. Participants also considered the implications of categories whose meanings shift between geographical regions and the broader challenge of respecting identity narratives in healthcare and research.

Session 2: Turning lived experience into ‘what next?’ questions

In the second session, participants developed questions based on earlier discussions, considering different target audiences such as researchers, clinicians, or policymakers.

These questions asked, for example:

• How can ethnicity data collection be co-designed with the communities it describes?
• What support do clinicians need to ask about identity in ways that feel safe and respectful?
• How can systems remain flexible enough to honour complex identities, while still generating usable data?

These ‘what next’ questions formed the bridge into the afternoon panel.

Throughout the morning, participants wrote their reflections on postcards. These showed evolving understandings of the meaning of identity, recognising how factors like location, skin colour, ancestry, culture, religion, gender and language shape self-definition. Many noted the harms caused by mislabelling, the complexity of intersecting identities and the need to make space for individual stories. Some reflected on their own biases and how identity can be both a source of pride and something one might wish to hide depending on social context.

Panel Discussion

In the afternoon, a panel of scientists, healthcare professionals and policy experts joined participants for an open conversation and a two-way dialogue, where panellists and participants reflected together.

Panellists noted the challenge of balancing standardised data with complex identities, and stressed that trust and context are key to accurate self-reporting (see Redman et al., 2024). They highlighted the importance of co-design with communities, cultural competence in practice, and transparency about why and how identity data is used, especially given political and ethical risks.

What we learned and what happens next

The workshop activities demonstrated just how much complexity sits behind seemingly simple categories. The event also showed that good policy depends on public insight and must be shaped by the communities it affects. We are grateful to everyone who took part.

Our next event linked to this project will focus on how feedback from patients and publics can be built into genomic services on an ongoing basis, rather than through one-off consultations. We will be sharing more details soon and hope to welcome many of the same voices – as well as new ones – into that conversation.

Nishtha Bharti, Susie Weller and Anneke Lucassen

Reflections from the Workshop: The Future of Low Carbon Health and Care

On Wednesday 24^th September 2025, academics, clinicians, local policy leaders, and the public came together for an afternoon of discussion on the “Future of Low Carbon Health and Care”. The workshop, co-hosted by the Centre for Personalised Medicine, the Global Centre on Healthcare and Urbanisation and the National Institute of Health Research Applied Research Collaboration Oxford and Thames Valley, was held at The Hub, Kellogg College, which as the University’s first Passivhaus building was a fitting setting for the discussions of the day.

The afternoon was opened by Professor Sara Shaw who spoke of the urgent need for low-carbon, climate resilient, and equitable health and care systems. She presented key themes for the workshop ahead; the environmental impact of health and care systems, the health and social harms posed by climate change, the need to ensure continuity of care within climate-resilient health systems, the potential co-benefits of considered climate action, and the moral and ethical imperative to act.

Interdisciplinary Perspectives

The afternoon proceeded with an interdisciplinary panel, chaired by Dr Juliet Carpenter, exploring perspectives on the role and actions of different sectors in limiting environmental impact.

Dr Martha Crockatt introduced her research on the relationship between green infrastructure – the collection of natural spaces that allow people to interact with ecosystems – and population health. Her work demonstrates the co-benefits of green space initiatives: actions that are ecologically beneficial and improve public health outcomes. Yet, she warned of the potential unintended consequences of so-called ‘green gentrification’, characterised by the relocation of higher-income individuals who are attracted by greener neighbourhoods, which can potentially displace local communities.

Continuing this conversation around inclusion and accessibility, Dr Jennie Middleton, presented the work of the ‘Care on the Move’ project, which is examining barriers to everyday mobility and ‘active travel’ by focusing on the physical, emotional, and logistical labour associated with care on the move. She spoke of how assumptions are often made in relation to ‘active travel’, which do not consider lived experience or social inequalities, and provoked discussion around the romanticised ideals of walking in urban imaginaries which exclude many population groups.

Dr Laurence Wainwright brought the role of business to the discussion, calling for a fundamental re-examination of the purpose of business – including how business can work better to ensure environmental responsibility. He drew particular attention to the relationship between extreme heat and mental health to highlight the intersection between environmental stressors, wellbeing and economic resilience, which provided a bridge into the later discussions of the day on the climate-related barriers facing health and care systems.

You can watch the recording of this discussion here.

Health, Care and Climate in Practice

The second panel of the afternoon, chaired by Dr Louisa Chenciner, engaged with the health and care system in relation to the climate crisis.

Speaking of the limitations of focussing solely on the ‘carbon footprint’ in healthcare, Dr Søren Kudsk-Iverson referenced the current policy landscape, with legally-binding NHS commitments to achieve net zero by 2040 for direct carbon emissions. Echoing earlier discussions, he emphasised the need to better address health and social inequalities in the healthcare system alongside efforts toward decarbonisation of core infrastructure.  

Subsequently, Dr Sara Khalid shared her work as head of the Planetary Health Informatics Lab. She provided perspectives on the ‘whole-exposome’ approach – which accounts for intersectionality, and how this can be applied to understand the effects of climate change on different population groups. She set out recent work to develop climate risk scores, amid more frequent and severe extreme weather events, and highlighted the need to integrate climate adaptation with mitigation.

Dr Amy Booth provided insights into the supply chains which enable the functioning of health and care systems. She referenced the wide scope of supply chains: from hospital food to medical devices and drugs. Her work encouraged attendees to broaden their perceptions of the environmental impacts of supply chains, beyond carbon footprinting, to consider waste byproducts and the ecological consequences of using natural products in manufacture.

Finally, Dr Pete Sudbury spoke of the need for radical, system-led change, in the face of threatened planetary boundaries. He explored the importance of narratives on climate change, and the potential for collaborative working in this area. Alongside fellow panellists, he advocated for the need to address wider social inequalities and for the NHS to move from sickness to prevention. 

You can watch the recording of this discussion here.

The event concluded with reflections from Dr Sarah Briggs, with the display of engaging visual minutes which conveyed key themes of the afternoon’s discussions created by Zuhura Plummer. Sarah spoke of how necessary changes within the health and care system are nested within broader societal and systems change, concluding that environmentally sensitive health and care must go beyond carbon. The evening culminated in a networking reception – a great opportunity to reflect and make new connections. 

We are keen to continue work to support ongoing collaboration, research and teaching in this area – if you are working in this or allied areas in Oxfordshire and would like to keep in touch, or if you would like further information about the event, please contact cpm@well.ox.ac.uk.

Louisa Chenciner and Megan Wadsworth

An afternoon exploring cancer vaccines

On June 2nd 2025, the Centre for Personalised Medicine and the Oxford Centre for Cancer Early Detection and Prevention (OxCODE) hosted an event that brought together clinicians, scientists, patients, social scientists, policy leaders, and community representatives to explore an ambitious and deeply personal question: what might it mean to prevent cancer altogether through vaccination? Over the course of the day, it became clear that this isn’t just a scientific challenge; it’s a social and ethical one too. Preventive cancer vaccines, particularly those aimed at people who carry inherited risk factors or precancerous changes, are no longer speculative. They are actively in development, with trials like LungVax already underway. But alongside this promising science is a responsibility to communicate carefully, build trust, and involve patients from the very beginning.

The science presented was both complex and hopeful. Professor Sarah Blagden shared Oxford’s work developing vaccines that train the immune system to recognise and eliminate abnormal cells before they become cancerous. These vaccines don’t target cancer itself, but the early warning signs: mutated proteins, or neoantigens, that mark high-risk cells. This proactive approach could transform how we think about cancer risk, especially for people with inherited syndromes like BRCA or Lynch. In the case of LungVax, a collaboration with UCL and the Crick Institute, the vaccine uses the same viral vector as the Oxford/AstraZeneca COVID-19 vaccine to target precancerous changes in smokers. An mRNA version is also in development, offering an opportunity to compare platforms.

What grounded the event most powerfully, however, were the voices of those with lived experience. Tom Bartlett, who lives with Lynch syndrome and received immunotherapy through compassionate access, shared the emotional realities of living with genetic risk. His reflections reminded us that these innovations are about more than clinical outcomes. They’re about giving people back a sense of agency, of choice, and of hope. He also called for honesty in communication. Cancer vaccines are an extraordinary opportunity, but they must be presented with care. Overpromising or simplifying risks undermines trust, and trust is something that must be earned, particularly among communities who have historically been marginalised or excluded.

Hearing directly from patient and public contributors like Claire Swan and Liz Thompson further enriched the day. Claire described how understanding the biology of cancer prevention at a cellular level helped her appreciate the power of early detection and the hope that cancer could be predicted and prevented years before symptoms appear. She emphasised how informative and empowering it was to learn about different types of vaccines and how they work, particularly in the context of her own conversations with friends and family. The way the term “vaccine” is understood by the public emerged as an important theme, and Claire highlighted the opportunity we now have to communicate the role of cancer prevention vaccines more clearly and honestly.

Liz also reflected on the inclusive atmosphere of the day, noting how everyone’s perspectives were welcomed, regardless of academic background. She found the session on language especially thought-provoking and stressed the importance of consistency in how the term “vaccine” is used across different settings to avoid confusion or mistrust. For Liz, it was deeply humbling to hear that research taking place in Oxford could one day result in an “AllVax” capable of reducing cancer risk for future generations. Both contributors were struck by the potential of these innovations to not only change outcomes, but to offer people real choice and hope in the face of an often-indiscriminate disease.

The importance of language and communication was a recurring theme. While “cancer vaccine” is scientifically accurate, it may be misunderstood or even alarming in the wake of recent global vaccine debates. Rather than rename the concept, many attendees agreed that clarity and context are key. Good communication, done in partnership with patients and community leaders, is more effective than rebranding. Discussions around equity also ran deep. Participants raised important questions about who will benefit from these vaccines. Will access to genetic testing limit who can participate in trials? Will underserved communities be overlooked again? We heard again and again that patients are not passive recipients of science; they must be co-creators of it. Inclusion is not just a moral imperative. It is essential for the science to succeed.

There was optimism, too. The NHS Cancer Vaccine Launch Pad is already demonstrating what’s possible when infrastructure aligns with innovation. It has increased access to therapeutic vaccine trials and shortened recruitment timelines significantly. The hope is that this kind of platform will not only support current efforts but be ready to scale as the science progresses. Looking further ahead, the idea of a universal “AllVax,” a vaccine designed to prevent multiple cancers, was raised. While still aspirational, it reflects the direction of travel: a future in which cancer prevention is integrated into personalised care from the outset.

As the event drew to a close, a strong message emerged. This is not simply a moment of scientific possibility, but one of shared responsibility. Cancer vaccines have the potential to reshape public health, but only if they are developed and delivered with care, equity, and partnership at every step. The work ahead is complex, but the conversations at this event marked a meaningful beginning.

Hiba Malik, Liz Thompson, Claire Swan and Sarah Briggs

Centre for Personalised Medicine Art Competition 2024-25

Earlier this year, the CPM ran an art competition asking UK students in Years 7 to 9 (approx. 11 to 14 years old) to send in art on a theme of ‘how personalised medicine affects our planet’ (click here to see a video introducing the competition).

We were delighted to receive a whole variety of amazing entries. The entries were judged by Dr Rachel Horton (CPM Junior Research Fellow), Dr Ali Kay (CPM Junior Research Fellow), Dr Gabrielle Samuel (Department of Global Health & Social Medicine, King’s College, London), Dr Kate Keohane (St Anne’s College/Ruskin School of Art), Dr Delia O’Rourke (Centre for Human Genetics), Geetika Kumar (Oxford University Personalised Medicine Society), and Raquel Parra (Paintings in Hospitals).

This blog post showcases our winners and finalists, we hope you enjoy these exceptional artworks as much as we did.

Winner: group category

By Charlotte, 12, and Tommy, 11, Mountbatten School, Hampshire

Charlotte and Tommy’s artwork, entitled ‘What we carry’ explores how personalised medicine impacts the environment by showing medical waste painted on a human body. It highlights the amount of single-use plastics, chemicals, and packaging that one person might create through personalised healthcare. By combining the human form with hand-drawn waste, the piece raises important questions about how we can enjoy the benefits of personalised medicine while reducing harm to the planet.

The judges thought that this was extremely original, striking and imaginative – it really brought home the environmental impact of our personal healthcare.

Winner: individual category

By Owen, 12, Heckmondwike Grammar School, West Yorkshire

Owen’s sculpture shows scales with a medicine bottle, tablets and ointment in one bowl being weighed against our planet and plants in the other bowl, inventively demonstrating tensions between producing medication with the aim of improving human health, and environmental sustainability considerations.

This ambitious and imaginative piece powerfully communicates that there is a balance to be struck between human medicine and the health of the planet. The judges felt that the entry was very creative and a thoughtful exploration of the topic.

Runner up

By Hannah, 13, St Helen and St Katherine, Abingdon

Hannah’s artwork ‘Harmful healthcare’ explores how personalised medicine has major consequences on the environment. Hannah explores six different reasons emissions are created when personalised medicine is used: mineral extraction; acid baths; electronic waste; manufacturing and packaging; data storage online; and sample storage. Each of these has a section in the piece which has a water colour representation of what it looks like when it occurs as well as a few concise words which explain what is happening. Hannah used recycled cereal boxes for the waterfall, diggers and desk. All of the letters come from magazine text and the water’s rocks and splash are made out of tin foil.

The judges thought that this considered environmental impacts very thoroughly and showed great use of recycled materials. It showed a diverse range of ways personalised medicine products and practices impact the planet and we loved the mixed media art style and clear message from the piece.

Highly commended

By Laranya, 14, Worksop College, Nottinghamshire

Laranya’s artwork, ‘The Pharmacy Fish’, represents the damage that can take place to our environment for example to our rivers, oceans and wildlife from personalised medicine waste. Laranya layered medicine packets, clinical waste bags, tablets and more in the shape of a fish to express the consequences of the mass production and waste of personalised medicine. She chose specific words such as disposable (encouraging waste), resistant (antibiotic resistance) and others to represent the impact of specific medical activities. The lips are made from disposable thermometers, the lower fins from dental care products. The main fins are from expired Covid tests, syringes and a face mask. The tail and orange parts are from a biohazard bag which is used to collect clinical waste from medical practices.

The judges enjoyed the fantastic use of health-related materials in this collage fish: the colours and textures created are really eye-catching. We thought the entry was extremely thoughtful and relevant regarding the environmental impact of clinical waste.

Highly commended

By Matilda, 11, Didcot Girls’ School, Oxfordshire

Matilda’s collage spells out ‘T1D’ – which stands for Type 1 Diabetes – and the drop of blood indicates the number of fingerpricks and injections that people with T1D have to do to keep blood glucose levels in a healthy range. The collage is made from some of the paper and plastic waste materials that are needed to manage health over a three-month period. These materials are the packaging for things like insulin vials, continuous glucose monitor sensors, infusion sets, cannulas and glucose tablets.

The judges thought this was an amazingly creative use of waste material from diabetes care, and a compelling example of how attempts to make medicine more sustainable are clearly really important but must not come at the expense of people’s health. We thought this was a very clever and original artwork.

Highly commended

By Giselle, 13, Harris Girls’ Academy, Bromley

Giselle wrote ‘The shattered pills, tubes and packaging represent pharmaceutical waste. When medicines are disposed of improperly, they enter the environment, contaminating soil and water systems, affecting wildlife and ecosystems. The silhouette of the human figure, combined with the heart and vibrant flower, symbolizes the personal and emotional toll of medicine on the individual. Personalised medicine focuses on tailoring treatments to specific people, but it can also have profound psychological and physical effects, as represented by the heart wound. In summary, my piece emphasises the duality of personalised medicine – its ability to help individuals heal, but also its unintended negative impact on the environment’.

The judges loved how this insightful entry portrayed how personalised medicine might have costs in some areas and benefits in others.

Highly commended

By Evangeline, 13, Worksop College, Nottinghamshire

Evangeline’s art focuses on the impact of personalised medicine waste on aquatic life. The judges enjoyed her skillful drawing and use of collage, and felt this entry was very relevant, direct and original.

Highly commended

By Kirat, 13, Guru Nanak Sikh Academy, London

Kirat’s engaging sculpture showcases positive and negative impacts of personalised medicine on our planet. The judges enjoyed the 3D model and how it portrayed both opportunities and challenges.

Highly commended

By Saanvi, 12, Wallington High School for Girls, Surrey

Saanvi explained ‘I created a painting on how personalised medicine on the planet is affected by the use of AI. In the middle of my artwork, I depicted a face, split in half, one side a robot, the other a doctor. This represents the state of the world right now as artificial intelligence has begun to take over the research in this field. Research to develop personalised medicine often involves lots of data and working with data uses computers which affects the carbon footprint of the planet. Surrounding the face are detailed DNA double helix structures which resembles the complexity and depth of AI influence in personalised medicine across the planet.’

The judges were struck by Saanvi’s focus on AI and data, and impressed by the level of artistry shown in this entry, which depicts the important connection between the data powering advances in personalised medicine and its impact on the planet.

Many congratulations to our winners and finalists, and thank you to everyone to entered or supported the Centre for Personalised Medicine 2024-25 Art Competition. As always it’s been wonderful to see the incredible talent and effort that young people have put into these thought-provoking pieces.

We’re planning to display these entries at an upcoming ‘Net Zero’ CPM event, and a selection of winning entries from this year, as well as 2022-23, and 2023-24 at the Churchill Hospital in Oxford this Spring. We hope to run the competition again next year, so please keep an eye on our website for the details!

Exploring Trustworthy AI in Personalised Medicine: Workshop Highlights

On November 12th, 2024, St. Anne’s College, Oxford, hosted the “Auditing Accountability in Trustworthy Artificial Intelligence with Applications in Personalised Medicine” workshop. This dynamic event united practitioners, stakeholders and research leaders across healthcare, computer science, policy, law, ethics, and social sciences. Organised by the Governance of Emerging Technologies Team and the Oxford Centre for Personalised Medicine, the workshop aimed to address the pressing challenges associated with evaluating and implementing trustworthy AI in personalised medicine.

The day opened with thought-provoking keynote presentations from Matthias Braun (University of Bonn) and Anja Thieme (Microsoft Research Cambridge) who explored the ethical and technical challenges of human-centered AI with applications in radiology. A lively panel discussion followed, featuring Chris Russell, Andrew Soltan, Anja Thieme, and Barbara Prainsack, who examined the technical hurdles of applying AI in real-world scenarios. The session, moderated by Kai Rawal, provided a platform for robust interdisciplinary dialogue. The subsequent sessions investigated the intersection of AI, ethics, and fairness. Angeliki Kerasidou (University of Oxford) offered an engaging exploration of trust and expertise in AI-assisted healthcare. You can watch the recording here. Barbara Prainsack (University of Vienna) contextualized personalised and precision medicine within the digital age, emphasizing the need for humanistic approaches, broader accountability, and stronger public value orientation of AI alongside technological advances. You can watch the recording here.

Following lunch, the technical challenges of implementing fairness in machine learning were considered with talks from Timothy Hospedales (Samsung Research and University of Edinburgh) and Eoin Delaney (University of Oxford), who introduced the OxonFair fairness toolkit. Next, a captivating panel discussion on AI ethics and law brought together Ignacio Cofone, Matthias Braun, and Mirjam Plantinga, and was expertly moderated by Sandra Wachter. The dialogue underscored the need for robust legal frameworks and ethical considerations in deploying AI systems. The workshop concluded with a keynote from Zachary Lipton (Abridge and CMU), who shared insights into the technical challenges tackled by Abridge in revolutionizing healthcare through AI. The day closed on a convivial note with a drinks reception, fostering further collaboration, and a delightful dinner hosted by St. Anne’s College for speakers and organizers.

This workshop served as a testament to the power of interdisciplinary collaboration in navigating the complexities of trustworthy AI in personalised medicine. The conversations and insights shared will undoubtedly shape the future of AI in healthcare, ensuring it remains both innovative and ethically grounded.