🧬New resources from @ga4gh.org added to ELSIhub - for responsible, voluntary, and secure use of genomic and other related health data.
🛠️ Genetic Discrimination Toolkit
🛠️ Genomic Sequencing in Newborn Screening Policy Tool
Learn more: elsihub.org/resources/ot...
🤝 If you have a new publication, grant, and presentation, showcase them on ELSIconnect and get kudos from our ELSI Community!
Join: connect.elsihub.org
The authors‘ analysis suggests broad re-use, possibly inconsistent with the original consent understandings. We urge caution with use of those data and similar datasets of unclear provenance.
New publication shared with our ELSI Community on the use of genomic data 👇by Malia Fullerton
"Human Genome Diversity Project data use and implications for the governance of legacy genomic data"
More -> connect.elsihub.org/c/general-di...
The team also recently published an open-access paper in Behavior Genetics describing the curriculum and offering practical tips for teaching the materials in university settings. Read:
🔗https://link.springer.com/article/10.1007/s10519-026-10251-7
The resource includes guidance on teaching standards alignment, classroom evaluation strategies, citation information, and downloadable teacher and student materials.
Developed by Wedow Lab @robbeewedow.bsky.social at Perdue.
📚A great ELSI resource for educators - Humane Genetics Curriculum (HGC)
It provides teaching materials designed to support thoughtful engagement with genetics, ethics, and society.
🔗https://connect.elsihub.org/c/general-discussion-e32f0f/public-release-of-humane-genetics-curriculum-hgc-materials
If you would like your ELSI-relevant review featured in this communication, please contact us at info@elsihub.org.
ELSI in Review is a listing of recently published lit reviews on key ELSI topics.
Our March 2026 set explores parent perspectives on genomic sequencing in newborn screening, returning value to communities from the All of Us Research Program, and more.
Read here: elsihub.org/news/elsi-re...
Drs. Theodore Drivas and Jessica Gold will discuss a large retrospective study of over 14,000 adults evaluating how race and social determinants of health influence access to adult genetics clinics, genetic testing decisions, and diagnostic outcomes - which reveals striking disparities.
An ELSI-related event hosted by @geneticssociety.bsky.social
Authors Jessica Gold and Theodore Drivas will present their recent @ajhgnews.bsky.social paper, "Racial and socioeconomic disparities in genetic evaluation and testing in the adult patient population."
elsihub.org/event/explor...
Next Friday! Join us on a conversation around reproductive justice. Register link below!
Dr. Jallicia Jolly founded her Lab BREHA Collective to advance reproductive justice - connecting research to tailored community interventions that advance equity, systemic change & community-building.
She will join #ELSIFridayForum on reproductive genomics.
🔗 www.addevent.com/event/nsczf1...
The annual meeting connects physicians, nurses, attorneys, historians, philosophers, professors of literature and the humanities, members of the clergy, hospital chaplains, social workers, and others engaged in endeavors related to clinical and academic bioethics and the health humanities.
This year, ASBH is emphasizing bioethics and health humanities as evolving fields, and bringing in conversation with medical and social changes.
Reminder: the call for proposals for ASBH Annual Conference 2026 will close at 5 PM CT, Monday, March 9, 2026.
This year's ASBH Annual Conference will be hosted in Indianapolis, Oct 14-17, 2026.
Submit your proposals here: asbh.org/annual-meeti...
New event in #ELSIOrbit
Join the @gescenter-ncstate.bsky.social Colloquium, “African Conversations: Insights from African Stakeholders on Biocontrol Technologies,” for a timely discussion on how emerging biocontrol approaches are understood, governed, and debated.
elsihub.org/event/ges-co...
Our conversation highlighted the scientific, regulatory, ethical, and practical challenges of scaling individualized therapies, including data sharing, manufacturing capacity, patient trust, and the evolving role of oversight as trials expand from n-of-one to broader populations.
In 2025, a first patient was treated for a life-threatening genetic disorder with gene editing therapy using CRISPR.
How do we scale it up, move from one intervention to a system that can responsibly treat many patients with rare diseases?
Read the Recap of our last #EFF ⬇️
March #ELSIFridayForum : Constrained Choice: Autonomy and Reproductive Genomics in Pregnancy Outcomes.
Precision medicine tools are integrating into reproductive care, but might reproduce disparities - how do we advance justice?
3/13/2026 12pm ET/ 9am PT
Register: www.addevent.com/event/nsczf1...
PARTNERS-DS (Program to Advance Research and Transdisciplinary TraiNing in the CarE of PeRsons with Down Syndrome), a short course in Down syndrome clinical research.
🔗https://elsihub.org/event/program-advance-research-and-transdisciplinary-training-care-persons-down-syndrome-partner-ds
This session will be moderated by Jennifer James, PhD, with panelists Khiara M. Bridges, PhD, and Jallicia Jolly, PhD.
Register: www.addevent.com/event/nsczf1...
By focusing on healthcare system pathway beyond individual choice, this discussion advances a model of genomics-informed pregnancy care grounded in equity, accountability, and reproductive justice.
Drawing on decolonial feminist frameworks and empirical analysis of healthcare delivery, it identifies evidence-based system-level strategies that support informed decision-making without reinforcing structural harm.
This forum examines how genomic technologies can be governed and implemented in ways that center reproductive dignity and autonomy.
In punitive reproductive policy environments, receiving genetic information during pregnancy can result in surveillance, coercion, and structurally constrained decision-making. Rather than alleviating inequities, genomics may reproduce longstanding disparities.
Prenatal screening, carrier testing, and emerging precision medicine tools are rapidly integrating into reproductive care. Yet these technologies operate within healthcare systems that racialize genetic risk, constrain meaningful choice, and unevenly distribute access to care.
March #ELSIFridayForum : Constrained Choice: Autonomy and Reproductive Genomics in Pregnancy Outcomes.
Precision medicine tools are integrating into reproductive care, but might reproduce disparities - how do we advance justice?
3/13/2026 12pm ET/ 9am PT
Register: www.addevent.com/event/nsczf1...
