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Framing questions and purpose statement for Conference
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Civil society is where we act as private citizens on behalf of a greater public. It includes
our actions as volunteers and organizers as well as donors, disaster responders, and
providers of social, cultural or environmental programming and services. Digital data and
information communication technologies are changing civil society as rapidly and
profoundly as they are business and government. Civil society’s unique relationships
between private actors and public benefits requires the articulation of its own principles
for the ethical use of digital data and associated tools (networks, algorithms, storage).
Some of these urgent challenges civil society groups are grappling with in the digital
● INFORMED CONSENT: Traditional concepts of informed consent no longer
adequately equip groups to ethically handle social media, metadata, satellite
imagery, and community identifying information.
● DO NO HARM: Institutions attempting to “do no harm” when handling digital data
do not have common standards for assessing what that harm might be, identifying
who could be harmed, and mitigating how that harm might be manifested.
● EVIDENCE VERIFICATION: Existing standards and practices for collecting,
verifying, and using information as evidence are challenged by today’s network of
volunteer actors, triangulated data flow between companies, governments, and
civil society organizations, and the lifespan and mutability of digital data.
● RIGHTS AND RESPONSIBILITIES: The rights of individuals and communities whose
data are being collected by civil society are unclear. Conversely, the
responsibilities of groups collecting individual and community data are undefined
The Ethics of Data in Civil Society (EoD) conference will provide a place for scholars,
activists, policy makers, funders, and members of the private sector to collectively
address shared questions that, until now, have been faced and dealt with in the silos of
specific work such as journalism, crisis response, civic technology, health care, criminal
justice and other spheres with vibrant civil society participants.
The unique contribution of this forum will be to articulate core ethical principles that cut
across domains and represent the ideals of civil society action. For example, medical
researchers, criminal justice lawyers, environmental activists, journalists and voluntary
technology organizations all face credibility challenges when social media are used. Civil
society actors need to develop procedures for involving volunteers in this work in ways
that respect the rights of the volunteers and the intended beneficiary populations,
maintain the integrity of the data, respect the often commercial or government data
ownership regimes, and still deliver benefits to a broad public. The EoD conference will
provide a place for actors from across these domains to develop shared principles for
The EoD Conference is designed to inform and complement other forums for research and
practical work on digital data and ethics by providing a focus on core principles and by
bringing together multiple stakeholders.
Our goal is to begin formulating principles of ethical digital data use in civil society that
might stand the test of time and weather the pace of innovation, both in technology and
in civil society organizing.
The working goals of the conference are to:
1) Identify and strengthen a community of practice that includes activists,
scholars, policymakers, funders, and corporate and government allies;
2) Work toward common language, knowledge, and idea exchange within this
community of practice; and,
3) Begin formulating the core principles of ethical digital data use in civil society.
A working group drawn from professionals and volunteers in several domains of civil
society (humanitarian aid, crisis response, medical research, health access, journalism,
education technology, higher education, civic technology, and community organizing)
has identified several shared issues about digital data. We’ve also recognized that the
digital versions of these challenges are different from their “analog” counterparts in
ways that require a new ethical calculus of private risk and public benefit. Specifically:
● The nature of digital copies, storage capacity and duration, and scale/pace of
transmission are all out of sync with existing ethical mechanisms.
● Digital data often allow multiple public benefits to be produced so it raises
questions of prioritizing or choosing among public benefits, not just weighing
public benefits against private risks. We need ethical frames to balance multiple
public benefits and multiple private risks.
● Some of the risks generated by digital data are so far away from the original
person that they might be considered public risks rather than private. For
example, genomic data can identify not only the original person but also his/her
distant relatives and descendants. This posits potential public benefits against
potential public risks. This “distance” can occur over both time and “space”
(distance from original person).
● The sheer volume of digital data and its emergence as a new class of economic
asset risks further exacerbating entrenched economic and social inequities.
● New systems thinking is required for this data-rich environment. For example,
what are the new partnership arrangements and business models that will be
required to align incentives for ethical use of data in and for civil society?
● The ubiquity of digital technology and the complexity of its inner workings raise
ethical questions regarding the obligations of those who build these tools to those
who will use them. A common set of ethical principles for ethical use of digital
data for civil purposes must engage technologists and be useful to them.
These practical challenges raise a set of questions shared across domains:
● What are the unique values of civil society that shape its approach to ethical
challenges raised by digital data?
● How can civil society express these values when working with commercial or
● How will civil society develop ethical codes regarding digital data?
● How do individuals and civil society learn about, transmit, follow and enforce
● How should private digital assets be used for public benefit and what rights,
privileges, and limits regarding their use are vital for a functioning civil society?
These ethical considerations about digital data are indeed raising larger questions for
how civil society operates and, eventually, structures itself in the digital age. We see
Governance. How will existing nonprofit/NGO governance structures need to change to
● Who owns the data and who makes decisions about it? Especially important are
decisions about collection, storage, use, sharing, and retention/destruction of data.
● What rights are there to privacy and anonymization that must be protected, by
whom and for how long?
● What rights do individuals represented in a dataset have to their information?
Ethical manipulation of data. How will nonprofits/NGOs structure themselves so that
both professionals and volunteers/experts and amateurs act ethically?
● How should organizations involve volunteers in generating and deploying digital
data in civil society (volunteer data scientists, voluntary social media activists)?
● What are the ethical standards for those who create the originating algorithms or
software code for tools used by civil society (including those to be be used by
volunteers)? Are there a common set of ethical standards to guide technologists,
legal, medical, and criminal justice systems working with shared digital data?
● Since data often flow across sectors (commercial/government/civil society) can
civil society specific articulate its specific values to build into these relationships?
Privacy. Many of the public benefits that civil society seeks to accomplish require new
calculus about personal privacy over new timeframes.
● How will nonprofits/NGOs make calculations that pit personal data privacy against
potential public benefits, now and in the future?
● Are there common practices regarding data privacy, anonymization, and
re-identification that apply to individuals in their interactions with civil society?
● Can civil society define and agree on common practices regarding data coverage,
quality, discrimination, accessibility, usability and openness of data?