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.
Videos are now available for sessions held during the two research ethics conferences presented at the University of Minnesota on March 8 and 9, 2017. At these events, researchers, policymakers, bioethicists, patient advocates and other stakeholders explored best practices for research with human participants. The conferences are The Future of Informed Consent: A Century of Law, Ethics & Innovation (March 8) and The Challenges of Informed Consent in Research with Children, Adolescents & Adults (March 9). The videos are posted at z.umn.edu/researchethicsvideos for free public access.
Last week, the Consortium hosted the final of three lectures on Emerging Diseases in a Changing Environment, featuring Dr. Julie L. Gerberding, MD, MPH, FACP. Dr. Gerberding is Executive Vice President at Merck and the former Director of the Centers for Disease Control and Prevention (CDC). In her talk, she described what she's learned about emergency preparedness through responses to anthrax, SARS and other biothreats, and proposed steps that should be taken to improve such responses. Dr. Gerberding was joined by Prof. Amy Kircher, DrPH (Director, Food Protection and Defense Institute) and Prof. Michael T. Osterholm, PhD, MPH (Director, Center for Infectious Disease and Policy). In a lively conversation, they discussed pandemic threats and responses and from the perspectives of their disciplines, ultimately arriving at the importance of advance planning by collaborations such as the United Nations Central Emergency Response Fund (CERF) to contain crises before they balloon out of control. A video of the entire event can be viewed here. Videos of the first lecture in the series, "Finches, Dogs, Lions and Zika: An Ecologist Looks at Emerging Disease" by Prof. Andrew Dobson, DPhil, can be viewed here. The second, "Ending the Pandemic Era: Science at the Animal-Human-Environmental Interface" by Jonna Mazet, DVM, MPVM, PhD, can be viewed here.
In a turnaround for the Food and Drug Administration (FDA), the agency has announced it will "allow a company to sell genetic tests for disease risk directly to consumers," according to the New York Times. 23andMe, a private genomics and biotechnology company based in Mountain View, California, pioneered products to allow customers to learn about their genome without the involvement of a doctor, genetic counselor or other health care professional. There are two levels of test offered; the default will only include the gene variants that could lead to the development of 10 rare conditions such as factor XI deficiency, Gaucher disease type 1 and celiac disease. For the genes associated with illnesses such as Parkinson's and Alzheimer's, there is a separate track that includes access to genetic counselors. An attempt by 23andMe to offer similar direct-to-consumer tests in 2013 was quashed by the FDA because of concerns about how patients might misinterprete potentially bad news without professional guidance. However, according to Dr. Robert C. Green, a Consortium collaborator who has researched the matter, studies since then have "there is some potential for distress, but it is much, much smaller than was anticipated.” Read the entire article here.
Given the drama of the past several weeks, during which Congress wrestled with repealing, replacing or reforming the Affordable Care Act (ACA), it's an opportune time to look at the trajectory of that legislation. On March 23, the seventh anniversary of the ACA's signing, the former General Counsel for the US Department of Health and Human Services (HHS), William B. Schultz, lectured at Harvard Law School in an event sponsored by the Petrie-Flom Center. He described what he saw from his front-row seat during five years at HHS, during which time the repeal of ACA was the number one priority of the Republicans in Washington, and it was deeply unpopular across the nation. Mr. Schultz also considered what's likely to happen now that the Republicans have control of all branches of government and the repeal agenda is complicated by the new support for the law by voters and some Republican governors. He concluded with a discussion of health policy options for the future. A video of the lecture and discussion can be viewed here.