Such a fabulous suite of resources that showcases the immense value of co-design. Look forward to learning more about their use in practice and impact. #genomics #equity #rarediseases

Attend the ELPAG Award lecture at 14:15 at #eshg2025 with Sylvia Metcalfe who played a leading role in setting up the Genioz project and find out about her research that led to the ELPAG Award.

Look forward to reading about your interview findings, Karen! Amazing work

Great to see participant involvement, population diversity & ELSI highlighted (among others) as key pillars of #genomics programs internationally

Utilisation of subsidised genetic and genomic testing in a publicly funded healthcare system 2014–2023 European Journal of Human Genetics - Utilisation of subsidised genetic and genomic testing in a publicly funded healthcare system 2014–2023

What happens when #genomic testing is funded?🧬

👉 rdcu.be/d8MSL

Last 10yrs 🇦🇺:
Many tests approved as evidence grows ✅
BUT testing volumes low AND inequitable access
Budget impact of #genomics minor: AU$3Mpa or <0.01% of all health expenditure 💰

@ausgenomics.bsky.social @iliasgoranitis.bsky.social

Now this is fascinating! 🌟 Genomic medicine is expanding beyond genetics clinics, but how do we make it sustainable? A new paper highlights the power of non-geneticist champions. 🧵1/4
www.nature.com/articles/s41...

New online consent tool for patients — Australian Genomics Informed consent is a critical component of genomic and genetic testing. It is a process whereby a patient agrees to undergo genomic testing in full knowledge of the potential risks, benefits and outc...

A new interactive online tool developed by Australian Genomics provides easy and accessible information in bite-sized chunks to guide patients through the key concepts of genomic testing.

Learn more: www.australiangenomics.org.au/new-online-c...

#genomics #genomictesting #consent #onlinetool

Screenshot of Figure 2: Ease of decision-making after genetic counseling (survey 2). A. The percentage of respondents indicating each decision was easy to make. B. Ease of decision-making by screening uptake for each choice. Values displayed as a percentage of respondents indicating the decision was easy or not easy, by screening test decision (uptake vs decline).

Separating immediate genomic diagnosis from broader genetic screening helps families with critically ill children focus on urgent decisions first: Flexible timing for additional screening later supports better decision-making bit.ly/3C0S65J

Great to see patient involvement featured in the revisions to the Declaration of Helsinki #patientexperience #livedexperience

📣And out now in Genetics in Medicine:

How do we best support choices when offering #genomic screening? @ausgenomics.bsky.social

Check out our 2-step model👇
doi.org/10.1016/j.gi...

Terrific collab @yvonnebombard.bsky.social & GeneticsAdviser! 🇨🇦🇦🇺 @genetic-fi.bsky.social @stephaniebest.bsky.social

So true! I loath those small lifts too - don’t accomodate all types of wheelchairs!

So pleased to see attention being drawn to the often inaccessibility of PDFs. Publishers should be adhering to digital accessibility guidelines! No one should be excluded from academia.

Congratulations!!

Thank you @trangdo.bsky.social!

Join us next Wednesday for the #GCRConnect Showcase and hear more about what genetic counsellors get up to in research. More info and link to register below ⬇️

Yes please!

📣 Out now in #HumanGenomics!

🤔 What do the public think about the use of AI in #genomic medicine?

👉 rdcu.be/d0PLP

Benefits: efficiency ⬆️ errors ⬇️

Concerns: data security 🔐 discrimination

Who would be liable for error? 🤖👩‍⚕️

@genetic-fi.bsky.social Danya Vears & Jack Harrison 👏

Thank you for sharing! Have been thinking about this in my PhD.

Why Patient Engagement is Actually Grief Work Patient engagement is often described as the process of involving patients in healthcare research, decision-making, and co-design. But there’s a deeper layer we rarely discuss: patient engagement is a...

Patient engagement is often described as the process of involving patients in healthcare research, decision-making & co-design. But there’s a deeper layer we rarely discuss: patient engagement is actually grief work
•Linxi Mytkolli💭

tinyurl.com/3srhxdwm
#PatientExperience #LivedExperience #Health