In The Spotlight
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News: Announcement
New Special Report of the Hastings Center Report
We are pleased to announce the publication of a new Hastings Center Report, special report, "Envisioning a More Just Genomics". The report, a collaboration between The Hastings Center and CERA, outlines opportunities to enhance justice in genomics,…
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Video: Webinar
December 2024 EFF: Building a Diverse ELSI Workforce: What does this mean and how should we do it?
Bioethics as a field was catalyzed by grave injustices such as the US Public Health Service Untreated Syphilis Study at Tuskegee. Similarly, a major… -
News: Article
CERA Shout-Outs
We are thrilled to announce the launch of CERA Shout-Outs, a special quarterly section of our newsletter, debuting in January 2025. This is your… -
News: Spotlight
ELSI Abroad: Spotlight on South Korea
In this seventh installment of the ELSI Abroad series, CERA spoke with Ilhak Lee, M.D., Ph.D., and Hannah Kim, M.D., Ph.D., about ELSI research in…
Upcoming Events
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Jan 31
ELSIconversations
ELSIconversations: Defining Benefit in Genomics Research
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Feb 13
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Apr 7 - 8
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Sep 17 - 19
Conference
Precision Genomics for Human Health
In the Media
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The Atlantic
Genetic Discrimination is Coming for Us All
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The New York Times
Life Without Sickle Cell Beckons Boy Who Completed Gene Therapy
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MIT Technology Review
Why we need safeguards against genetic discrimination
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STAT News & Undark Magazine
The untold story of the Human Genome Project: How one man’s DNA became a pillar of genetics
ELSIhub Featured News
New Publications
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Journal Article
“Should I let them know I have this?”: Multifaceted genetic discrimination and limited awareness of legal protections among individuals with hereditary cancer syndromes
by Ridhi Gopalakrishnan, Jordan Sam, Carly Butkowsky, Emma Reble, Marc Clausen, Sepideh Rajeziesfahani, Brooklyn Sparkes, Vernie Aguda, Melyssa Aronson, Derrick Bishop, Lesa Dawson, Andrea Eisen, Tracy Graham, Jane Green, Chloe Mighton, Julee Pauling, Claudia Pavao, Petros Pechlivanoglou, Catriona Remocker, Sevtap Savas, Sophie Sun, Teresa Tiano, Angelina Tilley, Kasmintan Schrader, Holly Etchegary, & Yvonne Bombard
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Journal Article
Employing effective recruitment and retention strategies to engage a diverse pediatric population in genomics research
by Michelle A. Ramos, Katherine E. Bonini, Laura Scarimbolo, Nicole R. Kelly, Beverly Insel, Sabrina A. Suckiel, Kaitlyn Brown, Miranda Di Biase, Katie M. Gallagher, Jessenia Lopez, Karla López Aguiñiga, Priya N. Marathe, Estefany Maria, Jacqueline A. Odgis, Jessica E. Rodriguez, Michelle A. Rodriguez, Nairovylex Ruiz, Monisha Sebastin, Nicole M. Yelton, Charlotte Cunningham-Rundles, Melvin Gertner, Irma Laguerre, Thomas V. McDonald, Patricia E. McGoldrick, Mimsie Robinson, Arye Rubinstein, Lisa H. Shulman, Trinisha Williams, Steven M. Wolf, Elissa G. Yozawitz, Randi E. Zinberg, Noura S. Abul-Husn, Laurie J. Bauman, George A. Diaz, Bart S. Ferket, John M. Greally, Vaidehi Jobanputra, Bruce D. Gelb, Eimear E. Kenny, Melissa P. Wasserstein, & Carol R. Horowitz
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Latest
January 2025 EFF: Public-Private Partnerships for Gene Therapies: What Does the Public Get?
Publicly-funded researchers frequently transfer their gene therapy and gene-editing medical research to venture capital-funded startups for clinical development.