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August 28, 2019

Hastings Partners on Unprecedented Genetics Resource Hub

The Hastings Center is a collaborator on a major new federally funded center that will fill a void in genetics research by collecting and sharing information about its ethical, legal, and social implications. This online genetics resource hub, the first of its kind, will enable people grappling with these issues to easily find ethical or policy guidance or published research, and to connect with experts who can help them. Lead investigators at The Hastings Center are Josephine Johnston and Carolyn Neuhaus. Read more.
 

New in Hastings Center Report: Patient as Gift

“I had cared for him many times in the past,” writes a physician about an extremely difficult patient. “He had been sick for nearly three decades and was a constant presence in the hospital. Among house staff, he was notorious. During sign‐out, the residents would eye the list of patients, spot Mr. R's name, and sigh. Sometimes they'd groan. If they verbalized anything, it was usually to the effect of, ‘Oh, I took care of him before. He's tough.’” But once the physician listened to him tell his life story – starting with his devastating diagnosis at age 40 and what it meant for him to lose nearly everything to illness – her view of him changed, and so did he. Read the essay for free.
 

In the Media: Hastings Scholar on the Ethics of Crowdsourced Medical Shows

Two new TV shows, “Diagnosis” on Netflix and “Chasing the Cure” on TNT/TBS, use crowdsourcing to make diagnoses of people suffering from unexplained illnesses. In an interview with the Los Angeles Times, Hastings Center research scholar Nancy Berlinger raises several ethical concerns. For example, disclosing a genetic condition on television “means family members are getting information they may or may not want in a public forum.” She adds another wrinkle: “It would be ironic indeed if a person diagnosed via crowdsourcing would then have to turn to crowdsourcing to fund their medical bills.” Read the article.
 

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