death & data wendy moncur epsrc post-doctoral research fellow, university of dundee visiting...
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DEATH & DATA
Wendy Moncur
EPSRC Post-doctoral Research Fellow, University of Dundee
Visiting Fellow, Centre for Death & Society, University of Bath
Death & Data
Problem area
Planned research
Impact
Early Findings
Summary
Questions
Internet usage is increasing exponentially across all age groups.
Users are storing data with personal, intellectual and financial significance online.
Problem area
Problem area, Planned research, Impact, Early Findings, Summary.
Problem area
Data stored online is wide-ranging:
Photos Blog posts Emails, text msgs Video Audio Membership of
groups/ clubs Share dealing … and more…
Where is it stored???
Problem area, Planned research, Impact, Early Findings, Summary.
“...technologies are not yet designed to ... acknowledge or engage with the inevitable death of their user.” Massimi, et al. 2009
Problem area
Problem area, Planned research, Impact, Early Findings, Summary.
“... instructions for retrieving data after a person dies are ... (at worst) nonexistent...” Farwell, 2007
Problem area
But data is valuable.... To the bereaved
Emotional Practical Financial Intellectual
To others Work-related data Disaster victim identification Fraudulent intent - harvesting
IdsProblem area, Planned research, Impact, Early Findings, Summary.
Industry collaborators
Problem area, Planned research, Impact, Early Findings, Summary.
School of Computing User-centred design with challenging
populations
Centre for Death & Society Interdisciplinary study of social aspects
of death, dying & bereavement
AHRC Centre in Intellectual & Property Law (SCRIPT) Intellectual property & ICT LAW Interaction between law & technology
Academic collaborators
Problem area, Planned research, Impact, Early Findings, Summary.
Planned research
Research addresses three key aspects of problem area:1. Bequest
2. Inheritance
3. Repurposing
Problem area, Planned research, Impact, Early Findings, Summary.
Participatory design, involving: Those who may face death
E.g. Military personnel, terminally ill, those awaiting organ transplant
The recently bereaved Also...
Organisations supporting the dying & the bereaved
Funeral directors Psychologists Lawyers
Research approach
Problem area, Planned research, Impact, Early Findings, Summary.
Bequeathing data: Problem
Tangible assets can be bequeathed.
Data cannot be bequeathed Password protected Who owns data? – ‘leakage’ T&C of ISPs
Problem area, Planned research, Impact, Early Findings, Summary.
Bequeathing data: Example
Problem area, Planned research, Impact, Early Findings, Summary.
Bequeathing data: Research objectives
Create generic mechanism for users Enable users to nominate inheritors of digital
artefacts
Define a new thanatosensitive design methodology Actively incorporate the unavoidable facts of
mortality, dying, and death into ICT research and design
A new form of affective computing?
Problem area, Planned research, Impact, Early Findings, Summary.
Inheriting data: Problem
No established executry process for data Causes problems for bereaved
What accounts did deceased have? Password protected accounts
Causes problems for ISPs Responsibility Repercussions
Problem area, Planned research, Impact, Early Findings, Summary.
Inheriting data: Example
L.Cpl.Ellsworth Killed in action in Iraq Yahoo! account contained
essential personal info Yahoo! refused access to
bereaved parents Court Ruling
Yahoo! will now review requests on a case-by-case basis
Problem area, Planned research, Impact, Early Findings, Summary.
Inheriting data: Research objectives
Identify current practices – good & bad
Create generic online protocol Facilitate inheritance of personal data
when a user dies
Problem area, Planned research, Impact, Early Findings, Summary.
Online memorialisation Legitimate mechanism to
support grieving But no rules about
acceptability or ownership E.g - Malicious posts on memorial
sites
Repurposing data: Problem
Problem area, Planned research, Impact, Early Findings, Summary.
Acceptable?
Repurposing data: Example
Problem area, Planned research, Impact, Early Findings, Summary.
Acceptable?
Repurposing data: Example
Problem area, Planned research, Impact, Early Findings, Summary.
Development of a model for repurposing digital artefacts for memorialisation Ownership Use Guided by social acceptability
Repurposing data: Research Objective
Problem area, Planned research, Impact, Early Findings, Summary.
Impact
Easy-to-use mechanism to bequeath digital artefacts
Streamlined process for inheritance
Individuals Technology sector
UK Organisations
Guidance to support those in advisory capacity
Best-practice guidelines for ISPs
New methodology for ICT researchers
Inform policy makers
Problem area, Planned research, Impact, Early Findings, Summary.
Early Findings
Current research is fragmented ICT: Human-Computer Interaction, Security, Disaster
Management Current HCI research focusing on bereavement &
memorialisation Industry often ahead of research
Technology landscape is complex & poorly understood1. Commercial solutions to bequeathing data flawed
2. Physical & virtual death may not be simultaneous3. Data may be repurposed in unexpected ways
Problem area, Planned research, Impact, Early Findings, Summary.
Early Findings (1)
Commercial solutions to bequeathing data Digital estate services
Majority created > 2006 Longevity?? Demands high levels of security & user trust
Posthumous emails Limited evidence of death required E.g. Deathswitch.com
Problem area, Planned research, Impact, Early Findings, Summary.
Early Findings (2)
Physical & virtual death not simultaneous
Living on in a virtual world E.g. Facebook
Going offline at End of Life (EoL) Barriers to ICT use at EoL include:
Physical/ cognitive decline which generates dynamic accessibility issues
Limited access to technology – e.g. in hospital
Problem area, Planned research, Impact, Early Findings, Summary.
Early Findings (3)
Many ways in which data may be repurposed post-mortem: ‘Normal’ death
Funeral Memorials Continuing bonds with the dead
‘Abnormal’ death – e.g. - Disaster- identification
E.g Facebook site Hotel Montana after Haiti earthquake
Murder – eulogisation Eg – Raoul Moat
Problem area, Planned research, Impact, Early Findings, Summary.
Summary(1)
Contextual understanding is vital in gaining design insights
In the last 3 months, I’ve worked with: Forensic anthropologist Psychologist Thanatologist & Death studies expert Funeral directors Disaster management expert Crematorium manager Religious representatives Humanist celebrant Designers Lawyers Computer scientists
Problem area, Planned research, Impact, Early Findings, Summary.
Summary (2)
Users die Volume of personal data held online growing Minimal acknowledgement of user death Digital artefacts retain value after user death
Fellowship research will address basic issues of: Bequest Inheritance Repurposing
BUT Complex research terrain Emergent area generates many questions
Problem area, Planned research, Impact, Early Findings, Summary.
QUESTIONS?
Wendy Moncur
EPSRC Post-doctoral Research Fellow, University of Dundee
Visiting Fellow, Centre for Death & Society, University of Bath