Maxine Mackintosh (she/her) Programme Lead for Diverse Data, Genomics England Co-Founder, One HealthTech
Contact: Email: email@example.com
What does your job actually entail? At the moment the Diverse Data Initiative at Genomics England is still fairly new so there’s lots of creating, designing and planning going on! I’m new to genomics, so overlaying all of that with trying to read and watch as much as I can about diversity in genomics, as well as speaking to as many people as I can, who have been doing this for years, is really my priority. It’s a lot of fun supporting our new team to get up and running and get new projects off the ground. Practically, it does mean going to lots of meetings and writing lots of emails...
When not at work you can be found...
I love a community... (hence, in part, DSxHE) and so just about any community-driven or community-related activity, count me in! I spend a lot of my evenings/weekends/early mornings working on One HealthTech which is a wonderful community I’m heavily involved in which aims to support better diversity and inclusion in the healthtech sector. I meet the most weird, wonderful and inspiring people. I love a morning rave (e.g. Morning Gloryville), I love painting my nails many/any colours and somehow, I’m in a perpetual state of always tidying my room. It’s been the case since I was 8.
What would like help with from members of the DSxHE community?
As I said, I’m very new to the world of genomics! Whilst I’ve been thinking about data diversity and fairness in data for a while, it’s never been in the context of genetic information which, like any data modality, has its own quirks, unique opportunities and perilous challenges. Very keen to hear from anyone working in genomics/diversity from just about any perspective, I’m all ears.
What’s a topic in data science/health equity that you know/care a lot about - why is it important/interesting, tell us about it!
Eeee I have so many! But I guess I should choose the one which is central to my day job - Genomic data diversity. There is a rather glaring problem of diversity within medical sciences and research; it’s heavily influenced by WEIRD countries (and by this, I don’t actually mean weird but rather countries that can be identified as — western, educated, industrialised, rich and democratic). In the context of genomics, this has most notably resulted in a situation whereby globally, genomic datasets are dominated by individuals of European ancestry. And… well.. Europeans aren’t the global majority (newsflash).
In a world where research and clinical practice is rapidly being driven by data driven systems, we have to carefully monitor how the solutions that are being built using potentially imbalanced and biased datasets can exacerbate the existing gap in equitable healthcare and research. In human genetics, this has resulted in misdiagnoses, poor understanding of conditions and inconsistent delivery of care, as well as mistrust amongst excluded communities on the collection and use of their genetic data. We’re currently in a position where not all clinical insights are equally as accurate or applicable to every single person. Boo to this. I’ve given a longer download on what the situation is in this Medium blog if you want to read more.
What’s a recent article/book/video/blog/event you’ve come across on data science and/or health equity that you found interesting and why? I guess this is somewhat related to data science, but I love Nesta’s Collective Intelligence playbook. It’s a way of approaching problems that democratises decision making and consultation to the people who really should be informing and driving decisions, at a significant scale and using technology to supercharge this. It’s effectively crowdsourcing but a bit more fancy. I find it very useful to constantly challenge myself to not default to decision-by-committee or even small internal meeting. Harder in practice mind you...
What is your favourite rainy day activity?
Drinking red wine and re-reading the same paragraph 325 times before passing out on the sofa.
Which words or phrases do you most overuse?
What makes you angry?
People who throw their gum on the street.
How would you like strangers to remember you?
Have I just met this stranger in the street or something? If so, as the uncomfortably friendly lady who despite their best efforts to shake off, insisted on having a deep and meaningful conversation on the street.
What is the best non-curse-world one-word insult?
Nincompoop (or “comfortable-middler” which is what a previous teacher would call students who were quite happy being bang average, but he said it with such venom that being comfortably in the middle became a terrifying prospect).