Dr Nicola Sugden

Autism ableism seen through research abstract contents: A mixed-methods analysis of language in NIH-funded genetic and genomic autism research

The absurdity card Fifteen years ago, a new incoming government swept away a policy its immediate predecessors had been pushing since shortly after the 2001 9/11 attacks: identity

netwars.pelicancrossing.net/2025/09/26/t... great overview of the history and evidence on ID cards by Wendy

from cyberselfish by paulina borsook: It's an inability to reconcile the demands of being individual with the demands of participating in society, which coincides beautifully with a preference for, and glorification of, being the solo comman- der of one's computer in lieu of any other economically viable be- havior. Computers are so much more rule-based, controllable, fixable, and comprehensible than any human will ever be. As many political schools of thought do, these technolibertarians make a philosophy out of a personality defect.

2/ In 2001, Borsook said tech "libertarianism" reflected an adolescent mindset, with a craving for unchecked independence & resistance to constraint.

She warned that tech libertarians wanted an anti-human world that worked more like a computer. From "Cyberselfish," a book based on her 90s writing:

In case you were wondering, two of the thirteen projects funded by the NIH's $50m Autism Data Science Initiative (ADSI) talk about prevention in their project abstracts: dpcpsi.nih.gov/autism-data-...

My reflection on our paper: we don't know to what extent this is what researchers really believe about autism, or whether they feel they have to 'hype up' their work in order to get funding. Either way, ableist ideas should have no place in research.

Autism ableism seen through research abstract contents: A mixed-methods analysis of language in NIH-funded genetic and genomic autism research - Nicola Sugden, Lily S Barna, Kaylee Foor, John Kee, Chr... In recent years, genetic and genomic autism research has come under increasing scrutiny, moving to the center of debates about ableism, neurodiversity, autism a...

We also tentatively identified some concerning themes across the sample, with researchers describing autism as 'disastrous' and something that needs to be prevented: journals.sagepub.com/doi/10.1177/...

Autism ableism seen through research abstract contents: A mixed-methods analysis of language in NIH-funded genetic and genomic autism research - Nicola Sugden, Lily S Barna, Kaylee Foor, John Kee, Chr... In recent years, genetic and genomic autism research has come under increasing scrutiny, moving to the center of debates about ableism, neurodiversity, autism a...

How do genetics and genomics researchers write about autism? Well... When we looked at abstracts for NIH-funded research and we found potentially ableist discourse and language to be ubiquitous: journals.sagepub.com/doi/10.1177/...

“Universities are in crisis and this inquiry couldn’t come soon enough.” @drjogrady.bsky.social

After sustained pressure from UCU, The Education Committee has launched an inquiry into university finances.

We’ll be submitting evidence. Full statement here: www.ucu.org.uk/article/1405...

Employment Tribunal rejects claims University and College Union discriminated against members on grounds of their gender critical beliefs The University and College Union has successfully defended claims against it in an Employment Tribunal from two UCU members who claim they had been discriminated against and harassed by the union beca...

Our branch stands firmly for trans inclusion and trans equality, and will not cease in protesting against discriminatory and inflammatory claims about trans people!

www.ucu.org.uk/article/1404...

The Pathways to Work Green Paper sets out plans to cut billions from health and disability benefits.

Instead of getting people into work, these cuts will push hundreds of thousands into poverty.

Our new report looks at the impact of cuts to PIP, UC health & scrapping the WCA (🧵)

Survey-based analysis of a science of science communication scientific interest group: member feedback and perspectives on science communication Coordinated attempts to promote systematic approaches to the design and evaluation of science communication efforts have generally lagged behind the proliferation and diversification of those efforts....

Excited to see the EMU’s work published yesterday in @jscicom.bsky.social! We studied the science communication (scicomm) landscape at NIH (obviously pre-2025). jcom.sissa.it/article/pubi... Congrats to AJ Hilliard, @nicolasugden.bsky.social, and Kristin Bass for their work on this.

So you think you know Roger Penrose? Be prepared to be shocked – Physics World Chanda Prescod-Weinstein reviews The Impossible Man: Roger Penrose and the Cost of Genius by Patchen Barss

Honestly, this book broke my brain a little and my heart big time. physicsworld.com/a/so-you-thi...

#DataStudies and #HistTech folks! Check out @0404am.bsky.social's forthcoming workshop 'A Social Science of Databases: Building Metaphysical Machines' dare.ed.ac.uk/events/2025/...

There were times when I was frustrated at how slow and difficult the work felt. Now I'm seeing how easy it is to tear things down.

NHGRI Fires Dozens of Employees, Puts Acting Director Vence Bonham on Administrative Leave Employees of at least four branches of the National Human Genome Research Institute received layoff notices on Tuesday morning.

Most of the people I worked with in my 1st postdoc just got fired. They worked to promote public understanding of genetics and genomics and to make research and its benefits more relevant and equitable. For reasons why that work is important, see: modern history. www.genomeweb.com/policy-legis...

A Trumpian approach to sex and gender data The UK Department for Science, Innovation and Technology has published a Review of Data, Statistics and Research on Sex and Gender, a hangover from the former Tory government’s mission to add…

Some longer thoughts on the Review of Data, Statistics and Research on Sex and Gender 📝 kevinguyan.com/2025/03/19/a...

I Just Quit My Job at the NIH. Slashing DEI Is Going to Haunt the Future of Medicine. We’d only started to correct a major gap in understanding.

I quit my job at the NIH last month, in large part because it seemed like I could no longer honestly write about topics like health equity. so I wrote about it for Slate instead 🧪 slate.com/technology/2...

Ethical Data Initiative Annual Townhall Event - The Ethical Data Initiative Dear Colleagues, On behalf of the Ethical Data Initiative (EDI) at the TUM Think Tank and the University of Exeter, we would like to invite you to participate in our first annual multi-stakeholder tow...

🌍💡Join us for our first annual multi-stakeholder town hall meeting, "Shaping the Future of Data Ethics"!

📆 March 31, 2025

Keynote speakers:
- RDA SecGen Hilary Hanahoe
- The Harvard Data Review's Xiao-Li Meng

Don't miss out! Find out more and register: ethicaldatainitiative.org/2024/12/20/e...

Thanks to MAFS, we know that *data* is what experts use to match brides and grooms, whereas *information* is incriminating knowledge about a bride or groom which must be brought up at the next dinner party.

Since Married at First Sight Australia S12 premiered in the UK last night its important to note how MAFS helps us understand the important difference between data and information.

A poster for the upcoming Queer Data Showcase. The event is hosted by Mystika Glamoor and is happening at Cabaret Bar, Pleasance in Edinburgh on 5 June 2025.

Edinburgh is hosting a QUEER DATA SHOWCASE! ✨

We’re inviting artists, academics, activists and anyone who works with – or is interested in – queer data to share their ideas.

📢 The Call for Presenters is live!

www.ai-ethics.org/queer-data-s... #data #AI #tech #LGBTQ #queer #edinburgh

I don't get sick, I *stay* sick 💅💃

Absolutely fantastic discussion of the case against polygenic embryo editing from @wiringthebrain.bsky.social

A few related thoughts…

Hi! It's not strictly history but I'm experimenting with a game-based reflexive method at the moment... If a bit of thinking about playful knowing and doing sounds interesting, drop me an email :)

Image showing the front covers of 16 books: Uplift; Ithaca; The Bone Shard Daughter; Creative Surgery; Chapterhouse: Dune; The Gilded Ones; Binti; Lavinia; Galatea; Ariadne; Phaedra; Wake Siren; Transition; Stone Blind; The Penelopiad; and Elektra

Image showing the front covers of 15 books: The Three Musketeers; Autonomous; Transcendent Kingdom; The Bone Ships; House of Odysseus; The Bone Shard War; The Bone Shard Emperor; The Priory of the Orange Tree; A Day of Fallen Night; The Future of Another Timeline; Translation State; Infinity Gate; The Stardust Thief; and Think Again

2024 in fiction. An unusual year in that I read two entire books set in the present real world with no spaceships or magic. I track my reading on Bookworm, the only book app that lets you clothe a silly worm avatar: www.bookwormreads.co/home

Call for Abstracts! Join @abbyrking.bsky.social and I in Seattle to talk about "Data, Care and Learning in Datafied Worlds" at 4S 2025. Deadline 31st January. dare.ed.ac.uk/events/2025/...

Dia Fight The Fantasy Diabetes Card Fighting Game.

I saw the 'Fantasy Diabetes Card Fighting Game' Dia Fight on Kickstarter (www.kickstarter.com/projects/rya...) and then I found out there are in fact numerous diabetes-themed games including Diabetor & The Sugar Monsters! and Battlebetes. MEDICAL ANTHROPOLOGISTS ASSEMBLE

tfw you're writing about the history of the relationship between mental illness and rheumatic conditions whilst yourself experiencing mental illness and rheumatic conditions

I'm back. Apologies in advance to all my new followers.

Logging in for the first time in a while to update my bio now that I'm in Edinburgh 😎