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Announcing a New Special Issue of the Journal of Literature and Science
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Legal Challenges to Newborn Screening Research
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CERA Statement Against the Weaponization of Genetic Research
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Decoloniality and Genetic Ancestry: Situating the "African…
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Ancestry DNA Testing: Seeking Roots and Uncovering Secrets
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1st International Conference Ethics of Engineering Life
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Third International Summit on Human Genome Editing Postponed
In the Media
The New York Times
A Stranger Filmed Her on the Train. TikTok Users Decided She Had Monkeypox
MIT Technology Review
Edits to a cholesterol gene could stop the biggest killer on earth
The New York Times
CRISPR, 10 Years On: Learning to Rewrite the Code of Life
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New Publications
Privacy risks in microbiome research: Public perspectives before and during a global pandemic
The majority of the 3,106 U.S. adults that Shin and Xu surveyed expressed a desire for consent materials with detailed information about potential privacy risks associated with microbiome data. Participants, who took the survey after Covid-19 was declared a nationwide emergency, were more likely to indicate higher levels of concern about and greater familiarity with microbiome privacy risks.
Perspectives from a predominantly African American community about biobank research and a biobank consent form
Sedig and colleagues identified trust as the most common theme in transcripts of focus group discussions about the consent form for the University of Michigan Medical School Central Biorepository. Participants expressed distrust of medical and research communities, perceived contradictions in the consent materials, stressed the significance of a strong doctor-patient relationship, and emphasized the importance of allowing time to process information.
Big health data research and group harm: The scope of IRB Review
Doerr and Meeder discuss an ambiguous provision in the Common Rule that may limit IRBs from considering long-term risks, such as potential group harms associated with the outcomes of big health data research.
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