Podcast Review: Centre for Personalised Medicine – Equity

We are all different, but equal in our access to healthcare. Or are we? What if the future of healthcare – designed to be more precise – actually ends up being less fair? Is personalised medicine only for the privileged?

To answer these questions, the Centre for Personalised Medicine (CPM) podcast explores how issues of equity and access shape the development and delivery of personalised medicine. In the Equity episode from September 2025, the discussion focuses on the challenges of ensuring that emerging medical technologies benefit everyone, and highlights strategies researchers and policymakers are using to address disparities.

In this episode, host Dr Rachel Horton is joined by CPM members Professor Anneke Lucassen, Dr Susie Weller, Dr Nishtha Bharti and Dr Maxine Mackintosh.

The podcast opens by explaining the meaning of equity. Listeners might expect the host and guests to present their own opinions, but it quickly becomes apparent that they are all speaking on behalf of their organisation. This is evident throughout the whole podcast, as the speakers often refer to work published by them or supported by CPM. While understandable, this means their individual experiences and unique voices are lost.

Equity was defined as having fair and equal access to genomic knowledge, services and benefits, regardless of social or demographic background, which resonates with my own understanding of the term. However, the podcast fails to deliver the personal stories behind equity, or the lack of it.

It did better when discussing ethics and diversity in genomics, highlighting how the composition of genomic datasets is a huge problem. Northern European ancestry is significantly overrepresented within these datasets, and there is a lack of diversity.

I was shocked to hear that some datasets are becoming less diverse. For example, people of European ancestry represent almost 88 percent in the GWAS diversity monitor, while the African population is a mere 0.16 percent at the time of writing!

This lack of diversity has direct implications when it comes to interpreting lab analysis of genomic data, as well as formulating genetic test panels – as reported elsewhere in BioNews this week (see BioNews 1335). For example, if there are too few African genomes in a reference database, it makes it difficult for clinical geneticists and bioinformaticians to understand the implications of variants found in that population for a patient's health.

Even large resources like the UK Biobank are skewed in their ancestral representation, and the problem does not stop here. It is often amplified by the funding bodies, which are more likely to invest in institutions with existing longitudinal datasets. It all sounded to me like a vicious cycle, and the future of personalised medicine is getting bleaker rather than brighter.

Dr Mackintosh framed this complex problem as a chain of events, which requires careful analysis in terms of the statistical biases that are introduced throughout the process of genetic data analysis. A few ways of addressing bias include mathematically correcting for biases in the datasets, assessing genetic variation and ancestry, and robust subgroup analysis.

But the problem might start way earlier – with the data collection when you use NHS services. You have most likely been given a form and four options to choose from when it comes to your ethnicity. But do we all fit into a category? The 'other' category seems the most appealing to me as a white non-British person, but it is not useful at all for researchers.

Ethnicity nowadays does not capture complex social constructs such as migration and interracial relationships. We increasingly see a 'hybrid' nature of the sense of belonging in the diverse communities of the UK, in which a simple ethnicity form would not work.

In a nutshell, the NHS is behind. I wonder, do we need these categories at all? Are they meaningful in the advanced healthcare systems? Why are we still segregating people by their skin colour or country of origin in order to provide healthcare and advice?

I hope for a future in which personalised medicine is not defined by whether your ancestors provided their DNA for a genetic database. It should truly be personalised based on your own genetic makeup.

Communication about ethnicity in the context of personalised medicine should be very clear: research is very exploratory and contributes to future knowledge. For Northern Europeans, it is easy to contribute to a database and gain knowledge about their health, but for underrepresented populations, the benefit of participating is minimal.

What stayed with me from this podcast is the message that we are investing too much time, effort and resources into personalised advanced care, but forget about the marginalised/poorer communities that need treatment now. This concept often gets ignored by policymakers focusing on preventing disease and looking for biomarkers, while others are suffering from curable diseases.

Overall, this 30-minute podcast only scratches the surface of the equity problem in the context of personalised medicine provided in the UK. I would recommend the podcast to researchers and policymakers as a good starting point for further exploration into the topic, but it is less likely to be of interest to the general public.

And to answer the questions I started with: the future is now, and healthcare systems urgently need changes from within to remove barriers to (personalised) medicine for all. Equity in healthcare is not a given, and this podcast is a powerful reminder of how easily we can take access to care for granted.