Informed Consent

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Some Swedes are Early Adopters of Biohacking

November 7, 2018

According to a report from National Public Radio, "In Sweden, a country rich with technological advancement, thousands have had microchips inserted into their hands. The chips are designed to speed up users' daily routines and make their lives more convenient — accessing their homes, offices and gyms is as easy as swiping their hands against digital readers." On April 3, 2019, a free, public lecture and webcast will feature Prof. Lisa Ikemoto (UC Davis School of Law) discussing "Biohacking and Cyborg Rights." Her talk is part of this year's Consortium lecture series, "Consumer-driven and DIY Science," which will also feature Sharon Terry (Genetic Alliance) and Michael Imperiale (University of Michigan).

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DNA Testing Being Used to Reunite Families Separated at Border

July 9, 2018

According to an article in Scientific American, "Several DNA testing companies have volunteered their services to help reunite immigrant families separated at the southern U.S. border. But scientists and ethicists warn broad-based genetic tests are 'overkill' and do not make sense for making such matches." Consortium chair Susan M. Wolf is among them; she raises concerns about whether permission to undergo genetic testing in such circumstances is really given freely, one of the core requirements for obtaining informed consent — the article notes, "a parent faced with not getting their child back if they do not get a genetic test really has no option." Wolf goes on to point out problems with defining "family" solely by biological relationship: “What about the loving long-time caregiver who may not be genetically related to that child? Those families deserve reunification, too.” Despite such concerns, The Atlantic reports that the US Department of Health and Human Services announced last week that it will conduct DNA tests in an attempt to comply with a court order from the US District Court in San Diego. The court declared that all minors from separated families need to be reunited with their parents or guardians by July 26. 

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Ketamine Study, Performed Without Patient Consent, Raises Alarms

June 25, 2018

An article in the Minneapolis Star Tribune describes concerns over a program in which paramedics from Hennepin Healthcare administer the sedative ketamine when responding to reports of extremely aggressive or agitated people. The newspaper obtained a draft report that examined the protocol, which was apparently driven by a study "which began last August, requires no consent from patients whose data can be used for research, but gives the subject the option to opt out afterward." The report alleges that in some cases, police encouraged or directed use of the drug. Representatives of Hennepin Healthcare explain that ketamine and and other sedatives "can be a lifesaving tool when paramedics encounter people showing signs of 'excited delirium,' a condition when severe agitation can lead to death." However, "a recent paper published by the hospital [noted that] 57 percent of study patients given ketamine required intubation — inserting a tube in the throat to help deliver oxygen." According to Carl Elliott, who is on the faculty of the Center for Bioethics, a Consortium member, “If I were asked to consent to this study in advance, I would refuse. I would never want to be in this study. And yet they’re describing it to people like it’s so uncontroversial that they can enroll them without even asking them.”

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Carl Elliott

Carl Elliott Awarded Guggenheim Fellowship

April 11, 2018

The John Simon Guggenheim Memorial Foundation has awarded Carl Elliott, MD, PhD, a fellowship in medicine and health. Prof. Elliott is on the faculty of the Center for Bioethics, a Consortium member, and in the Department of Pediatrics; he is also an affiliate faculty member in the Department of Philosophy and the School of Journalism and Mass Communications. During his Guggenheim Fellowship term, Elliott will be working on a book with the tentative title of Lonesome Whistle: Exposing Wrongdoing in Medical Research. Much of Elliott’s scholarship explores philosophical issues surrounding identity, authenticity and justice through the lens of biomedical technology. He is the author or editor of seven previous books, including White Coat, Black Hat: Adventures on the Dark Side of Medicine (Beacon, 2010) and Better than Well: American Medicine Meets the American Dream (Norton, 2003.) His articles have appeared in The New Yorker, The Atlantic Monthly, The London Review of Books, Mother Jones, The New York Times and The New England Journal of Medicine. Guggenheim Fellows are appointed on the basis of prior achievement and exceptional promise; this year, the competition attracted nearly 3,000 applicants. 

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