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Bill of Health Symposium Describes How to Improve Reproducibility

May 29, 2018

The Petrie-Flom Center of Harvard Law School has posted a symposium based on last March's national conference on research integrity and trustworthy science. The conference was the third annual all-University research ethics event, and was sponsored by the Office of the Vice President for Research, the Consortium and the Masonic Cancer Center. The symposium is introduced by Consortium Chair Susan M. Wolf and features perspectives by Prof. John P.A. Ioannidis (Stanford University), Prof. Barbara A. Spellman (University of Virginia) and Prof. C.K. Gunsalus (National Center for Professional and Research Ethics - NCPRE & University of Illinois). Videos of plenary talks and all conference sessions are available here

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MobileELSI Explores Ethical Issues in Health Research with Mobile Devices

May 17, 2018

Patient-led medicine, powered by mobile technology like smartphones and wearable fitness trackers, is transforming health research. While these new tools have powerful potential, some of this research is not subject to federal regulations, raising quandaries about how to ensure adherence to independent review, informed consent and privacy standards. A new NIH-funded project, MobileELSIwill develop and disseminate recommendations for the ethical conduct of this emerging research. It's led by Consortium collaborators Mark Rothstein (University of Louisville), Charlisse Caga-anan (National Cancer Institute) and John Wilbanks (Sage Bionetworks); Consortium chair Susan M. Wolf is serving on the Working Group. The Consortium hosted an event, How Patients Are Creating Medicine's Future, in Dec. 2016, featuring four experts in the field; video can be viewed here

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MPMC, Mille Lacs Band Partner to Reduce Lung Cancer Disparities

May 11, 2018

An article in the Brainerd Dispatch describes a new collaboration between members of the Minnesota Precision Medicine Collaborative (MPMC) and the Mille Lacs Band of Ojibwe; together, they will "investigate aspects of lung cancer and nicotine metabolism from commercial tobacco use that may be unique to the American Indian populations in Minnesota." As part of this effort, researchers will conduct two pilot studies, one on the rate of nicotine metabolism in members of the Band and one on a new approach to lung cancer treatment and early detection. Pamala Jacobson, one of the leaders of MPMC, emphasizes the need for researchers to take the time to establish authentic, honorable working relationships within communities affected by health disparities. "For precision medicine approaches to be effective, we have to know how to apply this exciting new science to all populations, not just healthcare systems in metropolitan areas or those serving high income patients," said Jacobson. "Conducting the needed research and implementing precision medicine to benefit the health of American Indians and other minority populations is a priority." In addition to Prof. Jacobson, Consortium chair Susan M. Wolf is also an MPMC leader. To learn more, click here.

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New Symposium on Informed Consent in Research and Genomics

April 25, 2018

The newest issue of the Journal of Law, Medicine & Ethics is a symposium guest edited by Consortium chair Susan M. Wolf, Ellen Wright Clayton and Frances Lawrenz, Principal Investigators on the LawSeqSM project. The title is "The Future of Informed Consent in Research and Translational Medicine;" it was inspired by last year's Consortium-sponsored research ethics conference. Both the conference and the journal issue look back at the evolution of informed consent since the historic Schloendorff case was decided more than 100 years ago. It was in that opinion Justice Benjamin Cardozo declared that a competent adult “has a right to determine what shall be done with his own body” in what is now regarded as the foundational statement of a patient's right to self-determination. Read the entire issue here

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Prof. Wolf Weighs In On New Alzheimer's Research

April 18, 2018

Consortium chair Susan M. Wolf  and Dr. Ronald Petersen (Mayo Clinic) were interviewed yesterday about the practical, ethical and legal implications of new tools for early diagnosis of Alzheimer's disease. The interview was conducted by Kerri Miller of MPR News, and focuses on Dr. Petersen's recently published research, with Prof. Wolf weighing in on the nuances of translating it to clinical practice. Phone calls from people already diagnosed with Alzheimer's and those who have a family history of the disease illuminate the challenges of grappling with this heartbreaking illness. Listen to the entire interview here.

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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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Wolf SM , Scholtes E , Koenig BA , Petersen GM , Berry SA , Beskow LM , Daly MB , Fernandez CV , Green RC , LeRoy BS , Lindor NM , O'Rourke PP , Radecki Breitkopf C , Rothstein MA , Van Ness B , Wilfond BS . Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants. Journal of Law, Medicine & Ethics 2018;46(1):87-109. PDF icon Download PDF (888.84 KB)

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