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.
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.
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.
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.
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.