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September 10, 2020

New Human Genome Editing Recommendations Require Three "Heavy Lifts" for U.S.

Hastings Center research scholar Josephine Johnston responded to a new report from an international committee tasked with defining a pathway to using gene editing to change human cells in ways that can be passed down to future generations. While asserting that Crispr and other gene editing technologies area not yet safe to use in humans, the committee made a strong case for its eventual use by prospective parents “with a known risk of transmitting a genetic disease” or “with reduced fertility.” Writing in Stat News, Johnston called the recommendations “reasonable,” but said that the proposed preconditions for using heritable genome editing would pose significant challenges for U.S. health and technology policy. She identified three “heavy lifts for the U.S.”:  the means to hold extensive societal dialogue, universal health care to assure equitable access, and a comprehensive regulatory structure to ensure the safety and ethics of heritable editing as part of reproductive medicine. Read the article.
 

New Hastings Research Scholar Explores Ethics of AI and Big Data

The Hastings Center is delighted to welcome Diane M. Korngiebel as a new research scholar. Her work focuses on the ethics of using artificial intelligence in health care delivery and research, the potential and limitations of Big Data science, and appropriate (and inappropriate) design and deployment of digital health applications. She comes to us from the University of Washington, where she was an associate professor in the Department of Biomedical Informatics and Medical Education and an adjunct associate professor at the School of Medicine. Read more.  
 

 

Barriers to Caring for Patients with Genetic Findings that Need Medical Attention

The opportunity to find out health-related genetic information about themselves is a key motivation for many people who have volunteered for the National Institutes of Health’s All of Us Research Program, an unprecedented initiative to collect genetic and other health-related data from at least one million people living in the United States. But the prospect of returning genetic information is wrought with anxiety among clinics serving uninsured and underinsured patients because of financial and other barriers to accessing follow-up care. A new project, supported by the National Institutes of Health, aims to help mitigate those challenges. Hastings research scholar Carolyn P. Neuhaus is leading the project; Nancy Berlinger and Karen J. Maschke are co-investigators. Read more. The new project is a supplement to an ongoing project, Understanding “Engagement” in the All of Us Research Program.


 

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