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August 8, 2019

In the Media: Rebooting Views on the Risks and Benefits of Genetic Information

Years ago, when the Human Genome Project began, bioethicists and geneticists had misplaced expectations for genetic research. Bioethicists feared that giving people their genetic test results would cause psychosocial distress such as depression. Geneticists thought single genes would have tremendous impact on common diseases. As the geneticists’ hopes were overblown, so were the bioethicists’ concerns, write Hastings Center research scholar Erik Parens and Hastings Center Fellow Paul Appelbaum, of Columbia University, in Stat. They explain that new findings have led to a “conceptual reboot.” Read more.
 

New in Braingenethics: Russia's CRISPR "Deaf Babies," Spotlight on Race and Genetics, and More

A Russian scientist recently announced plans to use CRISPR gene editing to alter a genetic mutation that leads to hereditary deafness. Is this mutation something that should be changed? This is one question explored in the latest issue of Braingenethics, a newsletter produced by a collaborative project of The Hastings Center and Columbia University Medical Center. Also in this issue: a roundup of new books and articles on race and genetics, including concerns about the resurgence of "scientific racism," the misuse of science to claim biological differences in socially defined racial groups. Read Braingenethics here. Subscribe here.
 

Live-Tweeting About Dying: Last Lessons from Kathy Brandt

Kathy Brandt, a leader in the hospice and palliative care movement in the United States, died on August 4 at age 53 of an aggressive form of ovarian cancer. She was an expert advisor to The Hastings Center project that produced The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life. Hastings Center research scholar Nancy Berlinger discusses Brandt’s invaluable contribution on the project, as well as her final work: up close and personal social media posts about her family’s end-of-life experiences. Read Berlinger’s essay on Bioethics Forum.
 

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