Shakkaura Kemet, MPH writes, “At my mother’s first oncology appointment, I sat beside her, swaddled in my Harvard sweatshirt. I hoped that the name of the august institution where I was an undergraduate would, in the doctor’s eyes, transport my mother from the wasteland of “difficult,” “noncompliant,” and “welfare queen” to which black female patients are often relegated and deliver her to the promised land of “human being.””

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Why are doctors pushing back?

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Researchers were surprised at the high reading level required to understand consent forms and how many difficult words appear in informed consent documents. “Ethically, it is important to patients to understand the options available to them,” says Nancy E. Kass, deputy director for public health at the Berman Institute

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CRISPR’s reputation was tarnished last year after a researcher in China edited a gene in embryos that went on to develop into two baby girls. The current CRISPR trials don’t have the same ethical challenges — the therapies won’t lead to DNA changes that can be inherited, says Alan Regenberg, Still, he says, there’s reason for caution when working with humans

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On 10 June 2017, a sunny and hot Saturday in Shenzhen, China, two couples came to the Southern University of Science and Technology (SUSTech) to discuss whether they would participate in a medical experiment that no researcher had ever dared to conduct

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Anonymized data sets are growing and it is becoming easier to identify individuals. Research-consent procedures must be updated to protect people from being targeted

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Hospitals should require patients to give explicit informed consent before physicians are authorized to discuss life-and-death matters with them offsite via technology

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It’s generally “ethically unacceptable” agrees Dr Ruth Faden, the founder of the Johns Hopkins Berman Institute of Bioethics. Nevertheless, she said that the patient’s rights and interest have to be balanced with the potential benefits of the research to humanity as a whole

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