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CSA Webinar: Approaching Informed Consent in Citizen Science: Legal and Ethical Issues

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Presented by the Law and Policy Working Group and Ethics Working Group

Date: Friday, November 22, 2019, from 1:00 PM to 2:15 PM EST

How do we know when citizen science contributors consent to participation in a research project? What are the risks to citizen science contributors (e..g, privacy and security) and citizen science project owners, respectively? Sometimes citizen science research is subject to federal regulations related to consent, and sometimes it is not.

In this webinar, we will briefly review the laws, regulations, and ethical perspectives on informed consent in the United States. Specifically, this webinar will cover the regulatory requirements related to informed consent under the U.S. Common Rule and FDA-regulated research, as well as regulations in some states and how they diverge from the Common Rule. We also will discuss the moral principles behind these regulations, and consider how these might be interpreted and used in citizen science. 

In addition, we will provide examples of how research projects are interpreting the regulatory and ethical obligations to citizen science contributors, and how they are working to make the consent process more robust. This includes Quantified Self Lab’s participant-led research and other efforts to improve research literacy via accessible education to support those interested in self-tracking and self-experimentation. Further, we will explore new potential ethical obligations for citizen science research not addressed by the Common Rule and other regulations, such as research using mobile devices. 

Presenters: 

  • Dr. Lea Shanley, Senior Fellow, Nelson Institute, University of Wisconsin-Madison; Advisor, SciStarter; and Steering Committee, CSA Law and Policy Working Group (Moderator)
  • Dr. Lisa Rasmussen, Associate Professor, Department of Philosophy and Faculty Fellow, Graduate School, University of North Carolina, Charlotte
  • Christi Guerrini, JD, MPH, Assistant Professor, Baylor College of Medicine, Center for Medical Ethics and Health Policy
  • Dr. Camille Nebeker, Associate Professor, UC San Diego
  • Dr. John Willbanks, Chief Commons Officer, SageBionetworks  

Follow the conversation on Twitter: @CitSciAssoc and using hashtags #CitSciPolicy and #CitSci

Presenter Bios:

Photo courtesy of presenter

Christi Guerrini, J.D., M.P.H., is an Assistant Professor in Baylor  College of Medicine’s Center for Medical Ethics and Health Policy, where she teaches and conducts research at the intersection of law, innovation, health, and ethics. Christi received a four-year K01 award from the National Human Genome Research Institute to study ownership interests in citizen science, and recently received a supplement to study ethics oversight of genomic community science and biohacking. She also currently serves as an affiliated researcher at the University of Houston Law Center’s Institute for Intellectual Property & Information Law, and is  a member of the Ethics Working Group of the Citizen Science Association. Twitter: @cjguerrini and @BCMEthics

Photo courtesy of presenter

Dr. Camille Nebeker, Ph.D., is Associate Professor of Behavioral Medicine in the Department of Family Medicine & Public Health, School of Medicine, UC San Diego. Her research and teaching focus on two intersecting areas: (1) research capacity building (e.g., participant-led, community-engaged research); and, ( 2) digital health research ethics (e.g., consent, risk/benefit, data management). She directs the Research Center for Optimal Digital Ethics (ReCODE.Health), including the Building Research Integrity and Capacity programs and the Connected and Open Research Ethics initiatives. She also serves on the Citizen Science Association Ethics Working Group. @cnebeker | @ReCODE_Health

Photo courtesy of presenter

Dr. Lisa Rasmussen, PhD, is an Associate Professor in the Department of Philosophy and a Faculty Fellow in the Graduate School at the University of North Carolina, Charlotte. One of Lisa’s main research areas is research ethics, and she is currently working on a book manuscript on unregulated research. She also writes and teaches in the areas of healthcare ethics and ethics consultation, and serves as Editor of the book series Philosophy and Medicine.  

Photo courtesy of presenter

Dr. Lea Shanley, Ph.D., is a Senior Fellow in the Nelson Institute at the University of Wisconsin Madison and Advisor to SciStarter. Her research interests focus on the intersection of open science, technology, policy and law. Previously, Lea served as a White House Presidential Innovation Fellow at NASA, co-founder of the Federal Citizen Science community of practice and citizenscinece.gov, and founding director of the Commons Lab at the Wilson Center in Washington, DC.  She was a CSA Board Member, and now serves on the CSA Law and Policy Working Group Steering Committee. @Lea_Shanley 

Photo courtesy of presenter

Dr. John Willbanks, Ph.D., is the Chief Commons Officer at Sage Bionetworks. Previously, Wilbanks worked as a legislative aide to Congressman Fortney “Pete” Stark, served as the first assistant director at Harvard’s Berkman Center for Internet & Society, founded and led to acquisition the bioinformatics company Incellico, Inc., and was executive director of the Science Commons project at Creative Commons. Wilbanks holds a B.A. in philosophy from Tulane University and also studied modern letters at the Sorbonne.

Two papers relevant to this panel presentation:

JMBE (Citizen Science Education: https://www.asmscience.org/content/journal/jmbe/10.1128/jmbe.v17i1.1020)BMJ (Governance of Participant-led Research: https://bmjopen.bmj.com/content/9/4/e025633.info)

Posted on: November 4, 2019  |  Category: Blog, CSA Blog, Ethics Working Group, Law and Policy Working Group, News, Uncategorized, Webinars