Consortium Introduction

The Consortium conducts original research, serves students and faculty, and advances public dialogue and understanding on emerging issues at the intersection of science and society.

Latest News

Sharon Terry

Citizen Science Pioneer Diagnoses Medical Research Shortcomings

June 22, 2017

In a newly-released TEDMED talk, Sharon Terry of Genetic Alliance describes her journey to becoming a citizen scientist after her two children were diagnosed with the genetic condition pseudoxanthoma elasticum (PXE), which causes the symptoms of premature aging. She quickly learned “that there was no systematic effort to understand PXE . . . researchers competed with each other because the ecosystem is designed to reward competition rather than alleviate suffering.” In response, Terry and her husband, Patrick, educated themselves on the disease and gathered thousands of similarly affected people to initiate studies and clinical trials. The message of her talk is that “citizen scientists, activists using do-it-yourself science, and crowdsourcing are all changing the game.” Ms. Terry is a member of the working group for the LawSeq project, which is laying the policy groundwork to translate genomic medicine into clinical application; the principle investigators are Consortium Chair Susan M. Wolf, JD; Ellen Wright Clayton, MD, JD of Vanderbilt University; and Frances Lawrenz, PhD of the University of Minnesota. Last December, the Consortium sponsored an event on patient-led medicine and citizen science; video can be viewed here.

Underwater research drone

Consortium Scholar Reveals Potential, Pitfalls of New Ocean Research Technology

June 21, 2017

New observational technologies are greatly complicating oceanographic research, even as they present tantalizing opportunities. Because they are less expensive and more networked than ship-based measurements, remotely operated vehicles like undersea drones and satellites can provide an unprecedented amount of data while democratizing the research process. However, these new tools also challenge existing maritime codes such as the United Nations Convention on the Law of the Sea. During the 2015-2016 academic year, Geography, Environment and Society PhD candidate Jessica Lehman was awarded a Consortium Research Grant to explore how these new technologies have become entangled in questions of territory, information-sharing, and politics. Lehman notes, “Concerns about global environmental crises such as climate change push scientists to collect more data and make it freely available online, but nations are concerned that these data may compromise their sovereignty, from military operations to fisheries development. To address these concerns, we can’t make assumptions about relationships between security and new technologies; we have to follow them into the world and see what they are actually doing.” Her Consortium-funded research informed her dissertation, which evaluated the interfaces between geopolitics and international oceanographic science. Lehman is currently an AW Mellon Postdoctoral Fellow in the Center for the Humanities at the University of Wisconsin, Madison; to learn more about her research, click here.  

Prof. Jon Merz

June 29 Seminar Will Analyze the Legal Status of Informed Consent Waivers

June 19, 2017

Waivers of informed consent for research participation are permitted under the Common Rule as well as the rule for Exception from Informed Consent (EFIC) for emergency research. However, the existence of these waivers doesn't mean they should be used broadly. On Thursday, June 29 from 12:15 until 1:30, Prof. Jon Merz, MBA, JD, PhD (Perelman School of Medicine, University of Pennsylvania) will discuss how acting without consent for research purposes differs fundamentally from similar waivers granted for emergency medical care. Prof. Merz's talk, "Is There a Legal Privilege to Waive Consent for Research?," is part of the annual seminar series presented by the Center for Bioethics, a Consortium member. It is free and open to the public; the venue is 2-250 Moos Tower on the U's East Bank campus.

LawSeq logo corrected Dec 2016

ELSI Congress Tackles the Big Questions on Genomics and Society

June 9, 2017

Earlier this week, the 4th annual conference of the National Human Genome Research Institute (NHGRI) Ethical, Legal and Social Implications (ELSI) Research Program was held in Farmington, CT. This year's focus was the many ways genomics is rapidly becoming a fixture in our lives, from prenatal genetic screening to the genetic testing of women with family histories of breast cancer. Physicians, geneticists, genetic counselors, social scientists and lawyers from academia, government and industry brought new insight and perspectives to debates over new and emerging data. Consortium Chair Susan M. Wolf, JD, moderated and presented during a session on a new, NHGRI-funded grant entitled "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." The panelists – Gary Marchant (Sandra Day O'Connor College of Law, Arizona State University), Amy McGuire (Baylor College of Medicine, University of Texas), and Ellen Wright Clayton (School of Law, Vanderbilt University) – are all PIs and collaborators on the grant. The speakers identified areas of agreement and disagreement, and suggest pathways to advance law and policy to support the optimal use of genomics. For more information, visit the ELSI Congress website.

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The Consortium offers educational events, original research, grants and news about our member centers and like-minded colleagues at the University of Minnesota and beyond, as well as making most of our lectures and conferences available for free, public access. The best way to find out about these offerings is to like us on Facebook or follow us on Twitter. Connect with us today! 

Research Funding Awarded

Each year, the Consortium provides funding for intramural projects related to the societal implications of problems in health, environment, and the life sciences. This year six awards totaling $35,796 were made to to provide a stipend for research and writing in the Summer 2017 or academic year 2017-18. Learn more and review previous awards.

Frontiers in Research Ethics

On March 8-9, the Consortium hosted two conferences on informed consent, featuring nationally-known speakers. The first of them, The Future of Informed Consent in Research and Translational Medicine, focused on how informed consent ethics and policy have developed over the past century, and what tools are needed to improve patient and research participant protections going forward. The second, The Challenges of Informed Consent in Research with Children, Adolescents and Adultsanalyzed approaches to seeking consent from adults with diminished capacity; community-based participatory research; and pediatric assent and guardian permission. The latter conference kicked off the first-ever Research Ethics Day at the University of Minnesota, and concluded with trainings and workshops the afternoon of March 9. Videos of the conferences will be posted on this website within the next two weeks. You can view videos of all the conference sessions here