Richard Milne

Trust and Perceived Trustworthiness in Health-Related Data Sharing Among UK Adults: Cross-Sectional Survey Background: Trust is an essential element in engagement with data sharing and underpins efforts to use data to combat health inequalities. Research into public trust in data sharing and healthcare set...

In an article for @jmirpub.bsky.social, @rjmilne.bsky.social, Alessia Costa, and I argue that trust should be understood contextually, not as a static concept.

Instead, trust is about the relationship between the trustor and trustee – in healthcare and beyond.

www.jmir.org/2025/1/e83533

In a GA4GH Public Attitudes blog post, Gabriela Chavaría Soley, Ronald Alfaro Redondo, and Henriette Raventós (Universidad de Costa Rica) explore individual attitudes toward medical and genetic data sharing in Latin America and the development of two new indexes. Read: www.ga4gh.org/news_item/in...

Fabricating mice and dementia: opening up relations in multi-species research This chapter was written during a moment of flux in the unravelling of the plaques, tangles, and tales that characterise over thirty years of research for treatments of dementia involving humans and a...

Our chapter on ‘Fabricating mice and dementia: opening up relations in multi-species research’ is now OA. @richgorman.bsky.social, Richard Milne and I explore the ways patient data, animal models and plaque concepts are woven together in making dementia www.ncbi.nlm.nih.gov/books/NBK615...

Factors Affecting Public Engagement by UK Researchers 2025 Take this survey powered by surveymonkey.com. Create your own surveys for free.

Calling all researchers and public engagement professionals: we want to find out the factors affecting public engagement in 2025, including opportunities, risks and barriers. Help shape the future of public engagement with STEM by taking our survey: www.research.net/r/RS_public_...

Geoengineering could fight climate change—if the public can be convinced Researchers’ failures to communicate are jeopardizing even basic tests, but new projects may point the way forward

The piece is more thoughtful about listening to (rather than just convincing) the public than the title suggests, and the Brexit effect on scientists' views of public engagement that it describes is definitely something I've seen in other areas www.science.org/content/arti...

Wellcome Connecting Science Science Policy: Improving the Uptake of Research into UK Policy Workshop dates: 18-20 August 2025 Location: The Moller Institute, Cambridge, UK Application and bursary deadline: 3 June

💡 Spark new thinking to shape the future of #SciencePolicy!
Applications are open for our #SciPol25 workshop.

📅18-20 August

We invite researchers and policymakers to share perspectives on best practices for improving the uptake of #research into UK science policy

📩Apply by 3 June
➡️ bit.ly/41GxNmG

Identifying trust cues: how trust in science is mediated in content about science Most public audiences in Germany receive scientific information via a variety of (digital) media; in these contexts, media act as intermediaries of trust in science by providing information that prese...

Introducing ‘trust cues’ – new #scicomm research paper by Justin Schröder, Janise Brück & Lars Guenther to identify trust cues in media content – see doi.org/10.22323/2.2...

23andMe’s bankruptcy is the worst thing that could happen to just about everyone involved The genetics company's bankruptcy is bad for co-founder Anne Wojcicki and shareholders. But customers whose data may not be protected are worst off.

23andMe’s bankruptcy is the worst thing that could happen to just about everyone involved

In Digital Genetic Data, An Uncertainty Over Ownership Digital sequence information has radically changed the way researchers look at the world’s genetic resources.

Digital Sequence Information (DSI) has transformed biological research, allowing scientists to find genetic tools online without physically collecting specimens. But this creates a legal gray area around benefit-sharing and ownership.

Six unbelievable things you probably didn’t know about DNA - Wellcome Sanger Institute Blog Explore the surprising secrets of DNA, genes and genomes.

#OnThisDay in 1953, the structure of DNA was discovered – the double helix 🧬

Our understanding has grown exponentially since then, here are a few interesting things we’ve learnt along the way ⤵️

sangerinstitute.blog/2022/05/17/s...

A question posed in every media since cave painting

Trust and public engagement in engineering biology www.engbio.cam.ac.uk/news/enginee...

Nice piece from @mikeinouye.bsky.social and @katholt.bsky.social on how decisions about data sharing "answer fundamental questions, such as: what do we want science to look like" www.nature.com/articles/s41...

What went wrong at 23andMe? Why the genetic-data giant risks collapse At-home DNA testing is no longer in high demand — and critics have raised concerns about unreliable tests and privacy.

It's all gone pear-shaped at 23andMe. Which is not a bad thing, given the misleading view of genetics that it encouraged. As Diana's article mentions, just telling people they carry a risk variant can be very problematic.
www.nature.com/articles/d41...

Yep, learn from the wisdom of youth

I guess we can't even look up genes at NCBI any more

Government needs to show that its AI plan can be trusted to deal with serious risks when it comes to health data The use of patient data has been controversial in the past.

🔎 #𝗔𝗜 𝗮𝗻𝗱 #𝗛𝗲𝗮𝗹𝘁𝗵𝗗𝗮𝘁𝗮: 𝗛𝗼𝘄 𝗰𝗮𝗻 𝘁𝗵𝗲 𝗴𝗼𝘃𝗲𝗿𝗻𝗺𝗲𝗻𝘁 𝗯𝘂𝗶𝗹𝗱 𝘁𝗿𝘂𝘀𝘁?

@rjmilne.bsky.social and @jonathanrgoodman.bsky.social explore the challenges in demonstrating trustworthiness in this @uk.theconversation.com article.

🔗 cstu.io/a01e19

@sangerinstitute.bsky.social @connectingscience.bsky.social 🧬🧪🔬

Government needs to show that its AI plan can be trusted to deal with serious risks when it comes to health data The use of patient data has been controversial in the past.

In an article for @uk.theconversation.com, @rjmilne.bsky.social and I argue that while the UK's plan to foster innovation through AI is ambitious, it will rely on public trust for success.

Yet anyone can claim to be trustworthy: how do we tell who actually is?

theconversation.com/government-n...

Got to pick mine up from the office, but looks great. I really enjoyed having the chance to write with you both, thank you!

Opinion | The Long Shadow of Fraud in Alzheimer’s Research (Gift Article) Fraud in research needs to end.

"The Devastating Legacy of Lies in Alzheimer’s Science" from @charlespiller.bsky.social www.nytimes.com/2025/01/24/o...

Multi-Species Dementia Studies Multi-Species Dementia Studies - Towards an Interdisciplinary Approach; This edited book explores multi-species approaches to dementia care. Drawing on work linking social and veterinary sciences, it ...

This book on multi species dementia is out at the end of this month, featuring me, @rjmilne.bsky.social and @richgorman.bsky.social reflecting on what is modelled in mouse models of #dementia and how this is made sense of by patients in #PPI policy.bristoluniversitypress.co.uk/multi-specie...

Brilliant! I hadn't realised it was set to come out. Look forward to seeing the whole collection

Out now in Nature Human Behaviour: Our 68-country #survey on public attitudes to #science 📣
It shows: People still #trust scientists and support an active role of scientists in society and policy-making. #OpenAccess available here: www.nature.com/articles/s41... @natureportfolio.bsky.social
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I have a post-doc position to study the effect of AI on education.

How can we ensure that AI tools enhance natural intelligence?

The position is a part of the Estonian Centre of Excellence in Artificial Intelligence.

Please repost - not easy to get people to work in Estonia 🥶

#edusky #neuroAI

The importance of public trust and institutional trustworthiness in genomic data sharing
www.ga4gh.org/document/pub...

and global attitudes towards the return of results from genomic research (and whether the USA is an outlier in this)
www.ga4gh.org/document/pub...

UK public attitudes towards the storage and use of genomic data

www.ga4gh.org/document/pub...

Public attitudes for genomic policy brief: genomic data sharing in Singapore The National Precision Medicine Program in Singapore is conducting ongoing consultation of Singaporeans to gather insights on the public’s opinions about genomic data sharing to inform related data go...

Previous briefs have looked at attitudes towards genomic data sharing in Singapore, www.ga4gh.org/news_item/pu...

Public perceptions of international genetic information sharing for biomedical research in China: a case study of the social media debate on the article “A Pangenome Reference of 36 Chinese Population... Background The international disclosure of Chinese human genetic data continues to be a contentious issue in China, generating public debates in both traditional and social media channels. Concerns ha...

It draws on the authors' 2024 Human Genomics paper humgenomics.biomedcentral.com/articles/10....

In the REWS group of the Global Alliance for Genomics and Health we have coordinated a series of briefs on public attitudes to genomic data sharing. The latest looks at public perceptions of international genetic information sharing for biomedical research in China www.ga4gh.org/news_item/pu...

We need to talk about human genome editing In a few decades, gene-editing technologies could reduce the likelihood of common human diseases. Societies must use this time to prepare for their arrival.

www.nature.com/articles/d41... new frontiers in discussions about hhge - editing for polygenic risk