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Genetic Discrimination Observatory @gdobservatory.bsky.social · Jul 21

A study led by GDO collaborator @yvonnebombard.bsky.social found that many parents are open to enrolling their children in genomic research🧬 — but only if they trust their child will be safe. Still, fears about future harm persist.

🔗 Read the full study here: pmc.ncbi.nlm.nih.gov/articles/PMC...

Parents’ attitudes towards research involving genome sequencing of their healthy children: a qualitative study

With widespread genomic sequencing research efforts, there is increasing impetus to return results to participants. Parents of healthy children are increasingly asked to participate in genomic researc...

pmc.ncbi.nlm.nih.gov

Genetic Discrimination Observatory @gdobservatory.bsky.social · Jul 21

🧬In a recent report, Ontario’s Privacy Commissioner warned that the use of genomic information, such as Investigative Genetic Genealogy (IGG) by the police without guardrails could deepen systemic discrimination against marginalized groups.
Read more here: www.theglobeandmail.com/canada/artic...

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Genetic Discrimination Observatory @gdobservatory.bsky.social · Jun 12

🧬 Lack of diversity in genetic research isn’t just a gap - it is exclusion. And that can lead to real-world discrimination in care and treatment.

🔗 More on this topic here → doi.org/10.1038/s415...
#Genomics #GeneticDiscrimination #InclusionInScience #GDO #DataEquity #IndigenousHealth #ELSI

Defining and pursuing diversity in human genetic studies - Nature Genetics

Calls for more diverse data in genetics studies typically fall short of offering further guidance. Here we summarize a policy framework from the Global Alliance for Genomics and Health designed to fil...

doi.org

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Genetic Discrimination Observatory @gdobservatory.bsky.social · May 29

Two months ago, GDO experts clarified how genetic information could be used following 23andMe’s bankruptcy. Read more about what has happened since here: www.bbc.com/news/article...

#GeneticPrivacy #GeneticData #23andMe #DataSecurity #EthicsInTech #Biotech #GenomicGovernance #GeneticDiscrimination

Struggling DNA testing firm 23andMe to be bought for $256m

It said new buyers Regeneron had committed to protect user data as part of the deal.

www.bbc.com

Genetic Discrimination Observatory @gdobservatory.bsky.social · May 24

🔍 What is genetic discrimination, and how does it affect our lives in Canada? In this short vid, GDO's Diya Uberoi & Abby Rud break it down—from legal gaps to action steps. A clear and compelling intro to your rights + genomics. 🎥
🔗 youtu.be/OqmOVRB41Y8
#GeneticDiscrimination #Bioethics #Canada

Genetic Discrimination in Canada

YouTube video by Genetic Discrimination Observatory

youtu.be

Genetic Discrimination Observatory @gdobservatory.bsky.social · May 15

🧬 At a recent McGill session, Dr. Diya Uberoi led medical genetics residents through the Genetic Non-Discrimination Act, its power, its limits, and why fear of insurance bias still keeps some from getting tested. Important conversations on policy, practice, and trust. #Genetics #Policy

Genetic Discrimination Observatory @gdobservatory.bsky.social · May 6

🚨Sociogenomics is evolving rapidly—but are we asking the right questions?
Polygenic scores for social traits (like same-sex behavior) raise complex ethical and societal concerns that are often overlooked.
🔗 www.tandfonline.com/doi/full/10....

From Data to Harm: Exploring Ethical and Social Implications of Polygenic Scores for Social Traits

Published in The American Journal of Bioethics (Vol. 25, No. 2, 2025)

www.tandfonline.com

Genetic Discrimination Observatory @gdobservatory.bsky.social · Apr 24

Ever been offered genetic testing through work? 🧬
Most folks don’t know how their DNA might be used.
60% haven’t heard of GINA, the law that protects against genetic discrimination in jobs + health insurance.
🔗 onlinelibrary.wiley.com/doi/10.1002/...
#WorkplaceWellness #Bioethics

The Genetic Information Nondiscrimination Act and workplace genetic testing: Knowledge and perceptions of employed adults in the United States

Workplace wellness programs are an emerging avenue for health-related genetic testing, with some large employers now offering such testing to employees. Employees' knowledge and concerns regarding ge....

onlinelibrary.wiley.com

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Genetic Discrimination Observatory @gdobservatory.bsky.social · Apr 17

Kids with rare cancers in Canada are being left out of genomics research due to fears of genetic discrimination, despite protective laws. We’re working to change that. All children deserve access.
🔗 www.accessforkidscancer.ca/projects/lev...
#HealthEquity #PediatricOncology #GeneticDiscrimination

Leveraging Human Rights To Clarify The Risk Of Genetic Discrimination In Pediatric Oncology - Access

ACCESS is organized into seven research themes from understanding cancer development to its diagnosis, treatment, and survivorship and two cross-cutting groups to support all thematic areas.

www.accessforkidscancer.ca

Genetic Discrimination Observatory @gdobservatory.bsky.social · Dec 19

It’s a wrap on the 5th Annual GDO Conference in Istanbul! 🌍✨
Two days of rich discussions on ethics & emerging tech in genetics—AI, genetic discrimination, pharmacogenomics & more.
Huge thanks to our speakers & attendees! See you in 2025! 🎉 #GDO2025

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