In The Spotlight
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Event: ELSICongress
The 6th ELSI Congress | ELSIcon2024
ELSIcon2024: The 6th ELSI Congress will take place at Columbia University in New York City from June 10-12, 2024. The 6th ELSI Congress welcomes all with an interest in the ethical, legal, and social implications (ELSI) of genomic research. Researchers, scholars,…
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Video
TraineeHub | Navigating Authorship: Who's on First?
Publishing in a top-notch scientific journal is a great reason for celebration. But getting there takes time, effort, and the ability to navigate… -
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Twisted Helix: Can Public-Private Partnership Genomic Projects Be Fair and Equitable?
Biotechnological innovation almost always entails all three strands of the triple helix: academia, government, and industry. This is increasingly… -
News: Spotlight
New ELSIconversations with the Ancestry and Diversity Working Group of ClinGen
The Ancestry and Diversity Working Group (ADWG) of the Clinical Genome Resource (ClinGen) was founded in 2017, with the goal of providing guidance…
Upcoming Events
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ELSICongress
The 6th ELSI Congress | ELSIcon2024
In the Media
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23andMe Breach Targeted Jewish and Chinese Customers, Lawsuit Says
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New Publications
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Journal Article
Disclosure of genetic risk to family members: A qualitative study on healthcare professionals' perceived roles and responsibilities
Mendes, Paneque, and Sequeiros interviewed health care professionals (HCPs) working in medical genetics services in Portugal and found that while HCPs believe it is their responsibility to inform patients about genetic risk to their relatives, the degree to which they are proactive in providing disclosure assistance is limited by their concerns about protecting patient confidentiality in compliance with legal requirements and structural barriers.
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Journal Article
Reflections on 'common' genetic medical history questions: Time to examine the what, why, and how
Waltz and colleagues analyzed audio-recorded conversations between providers and caregivers of pediatric patients with suspected genetic conditions and identified examples of providers using stigmatizing language, asking questions related to educational attainment and work history without clarifying the intent, or making presumptions about race, ethnicity, or family structure. The authors suggest that retaining only necessary questions and avoiding problematic phrasing could improve communication between providers and families.
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Journal Article
The regulation of health data sharing in Africa: A comparative study
McKay and colleagues compare legal and regulatory frameworks of health data sharing in South Africa, Ghana, Kenya, Nigeria, and Uganda; describe gaps and inconsistencies; and suggest improvements to balance the benefits of health data sharing with privacy protection and support the continued growth of health research funding in these countries.
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Latest Webinar
April 2024 ELSI Friday Forum: Why Film and TV? ELSI Research and the Public Imagination
The study of genetics has long been viewed through the lens of mass media and entertainment, and as the field has progressed in recent decades, its portrayal in media, television…