$30 – $60

Ethical Data Collection for Nonprofits

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Civic Hall

118 W 22nd St

12th Floor

New York, NY 10011

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About this workshop
Through short exercises and case studies, this workshop will provide an introduction, specifically tailored for teams from small nonprofit organizations, to concepts of ethical data collection in the context of information communication technologies (ICT) and internet of things (IoT) data collection efforts.

While the seminal “Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research” has been available since 1976, and the related, ICT-focused “Menlo Report” was published in 2012, researchers and professionals who work with ICT and IoT technologies are not yet uniformly trained in the basic ethical principles that help to shape human subjects-related research like clinical trials. This lack of uniformity is concerning; while many ICT and IoT technologies may be evaluated to put subjects at “minimal [physical] risk” by institutional review boards, the massive volume of human subject data collected by some ICT and IoT technologies introduces new kinds of risk to individuals, communities, and societies. Recent developments, including Europe’s General Data Protection Regulation (GDPR) and U.S. congressional hearings with major ICT media companies, have indicated a new level of awareness regarding human subject data. But the actions taken on behalf of organizations, institutions, and companies in response to this new awareness also lack uniformity. In some cases, these actions even reflect an ignorance of the principles established by the Belmont and Menlo Reports.

While this workshop is too small in size and scope to tackle these large-scale issues comprehensively, it will operate with these issues in mind as it takes participants through exercises of establishing stakeholders, collecting data, and drafting larger policies. The ultimate aim of the workshop is to establish a baseline of understanding, and awareness of resources, both historical and new, on ethical data collection as it pertains to ICT and IoT.

Three hours of the workshop will be lecture- and activity-based, and in the last thirty minutes, you will have the opportunity to receive one-on-one mentorship on your organization’s own data. There will be time for a 30-minute break, which will include an informal data collection activity.

Takeaways

  • Learn about ethical data collection concepts including human subjects protection, human rights, data protection and security, data privacy, data collection methodologies, anonymizing subject data, working with institutional review boards (IRBs), and developing stakeholder- and community-oriented policies for ethical data collection.
  • Identify major stakeholder categories in your research and develop data collection strategies that consider inclusion, representation, and consent from all stakeholder groups.
  • Learn to consider and incorporate ethical considerations into your choices of data collection technologies and methodologies.
  • Discuss basic legal implications of data ethics and privacy policies across continents.
  • Learn about further resources for human subjects training.

Prereqs & Preparation

  • Each participant should bring a printed pamphlet or write-up about their organization. If teams of organizations are attending, the number of pamphlets should equal the number of team members.
  • Each organization should bring a small dataset to work with toward the end of the workshop, and preferably their own laptops on which to work with the data. The data should be anonymized or falsified so that the data contains no sensitive or personally identifying information.
  • Each organization should send the facilitator (arlduc [at] nyu.edu) this dataset at least 2 business days before the workshop.

About the Facilitator
Arlene Ducao is an educator and engineer who makes technologies that examine the relationship between the natural landscape, our built environments, and ourselves. She is a Principal at the DuKode Studio, a scientific and environmental design firm in Brooklyn, and the CEO and cofounder of Dukode's affiliate company Multimer, a spinoff from MIT Media Lab. At Multimer, she developed her invention MindRider, the geospatial brainwave-mapping system profiled in WIRED, New York Times, Discovery Channel, MSNBC, Fast Company, Science Channel, and many more. A recipient of the South by Southwest Winburne Community Service Award for her work on satellite mapping in Indonesia and Kenya, she teaches at NYU and MIT, where she presents a range of topics, from multidimensional data visualization to digital fabrication and its cultural underpinnings. Her work has been published in scholarly outlets and books including Data, Architecture, and the Experience of Place (Routledge, 2019) and Instrumental Intimacy: EEG Wearables and Neuroscientific Control (JHU Press, 2017). She is also active as an organizer-advocate in the Working Families Party and FUREE (Families United for Racial and Economic Equality). Arlene Ducao holds degrees from UMD, SVA, and MIT.

Civic Hall

Based in NYC, Civic Hall is a non-profit collaboration space for the world’s civic innovators interested in using technology for social good. We are a community of social entrepreneurs, change-makers, government employees, hackers, academics, journalists, and artists who share knowledge, build tools, and solve problems together. Civic Hall aims to be a safer, more inclusive space, and all Civic Hall members, staff, invited speakers, guests, and vendors visiting our space are expected to abide by our Code of Conduct.

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Civic Hall

118 W 22nd St

12th Floor

New York, NY 10011

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