A lot of the ways that we already work at Sage are now suddenly pushed into the mainstream – cloud-based science, data reuse, rapid feedback loops – thanks to the current moment. We also spend a lot of time thinking about modern informed consent and data governance. So it’s not a surprise that we’re having a lot conversations about all those topics right now. But we’re having them in one to one, or small group, formats, and it feels like right now we should find some ways to open them up to the public. To that end, Sage has launched a series of webinars to bring these discussions to a broader audience.
March 30, 2020 – The unintended consequences of good intentions in technology
Discussion: The lessons of previous pandemics and technology, as well as a survey of the state of the art of digital epidemiology, and some ideas on what comes after the pandemic.
Dr. Jasmine McNealy @JasmineMcNealy is an associate professor in the department of telecommunication at the University of Florida’s College of Journalism and Communications. She is a fellow at the Berkman-Klein Center for Internet & Society and the Digital Civil Society Lab. She studies media, information, and emerging technology, with a view toward influencing law and policy. She earned a PhD in mass communication and a JD at the University of Florida, and a BS in both journalism and Afro-American studies at the University of Wisconsin.
Dr. Elaine Nsoesie @ensoesie is assistant professor in global health at the College of Arts & Sciences at Boston University. She applies data science methodologies to global health problems, using digital data and technology to improve health, particularly in the realm of surveillance of chronic and infectious diseases. She has also been appointed as a BU Data Science Faculty Fellow, as part of the BU Data Science Initiative at the Hariri Institute for Computing.
Sean McDonald @seanmmcdonald is a CIGI senior fellow and the co-founder of Digital Public, which builds legal trusts to protect and govern digital assets. He is a lawyer and the CEO of FrontlineSMS, an award-winning global technology social enterprise, a fellow at the Duke Center on Law & Technology, a visiting fellow at Stanford’s Digital Civil Society Lab and a former affiliate at Harvard’s Berkman Klein Center. He holds a J.D./M.A. from American University, with specialization in international law and alternative dispute resolution, and is a member of the New York State Bar Association.
Moderator: John Wilbanks @wilbanks, chief commons officer, Sage Bionetworks
April 9, 10 a.m. PST/1 p.m. EST
Research Ethics and Public Health Emergencies: In this session we will review the recent history of the Seattle Flu Study, using it as a springboard for exploring issues of consent, privacy, and the intersection of public health law with human subjects research during public health emergencies.
Jennifer K. Wagner, JD, PhD, is associate director of bioethics research and assistant professor in the Center for Translational Bioethics & Health Care Policy at Geisinger, and is a licensed practicing attorney in Pennsylvania. She earned her JD at the University of North Carolina in 2007 and PhD in anthropology at Pennsylvania State University in 2010 before completing post-doctoral research appointments at Duke University’s Institute for Genome Sciences & Policy and the University of Pennsylvania’s Center for the Integration of Genetic Healthcare Technologies. Prior to joining Geisinger, Dr. Wagner served in a U.S. Senator’s office in Washington, DC, as a 2014-2015 AAAS Congressional Fellow. She was the 2019 chair of the ASHG Social Issues Committee and member of the AAPA Science Policy and Ethics Committees. Dr. Wagner’s research has been funded by the National Human Genome Research Institute. She is also a member of Sage’s Scientific Advisory Board.
Professor Kayte Spector-Bagdady, JD, MBe, is a lawyer/bioethicist and Chief of the Research Ethics Service in the Center for Bioethics and Social Sciences in Medicine at the University of Michigan Medical School. Her research focuses on the secondary research use of health data and biospecimens. Prof. Spector received her J.D. and M.Bioethics from the University of Pennsylvania Law School and School of Medicine respectively after graduating from Middlebury College. She is also a former practicing biotech attorney and was Associate Director of the Presidential Commission for the Study of Bioethical Issues under President Obama (2010-2015).
Facilitator: Meg Doerr, MS, LGC, Principal Scientist, Sage Bionetworks