Presentation that was given at 1st International Conference on Information System Security and Privacy (ICISSP), Angers, France, February 9-11, 2015.

1. RESEARCH ETHICS AND PUBLIC TRUST,
PRECONDITIONS FOR CONTINUED
GROWTH OF INTERNET MEDIATED
RESEARCH
Public Confidence in Internet Mediate Research
Ansgar Koene, Elvira Perez, Christopher J. Carter, Ramona
Statache, Svenja Adolphs, Claire O’Malley, Tom Rodden, and
Derek McAuley
HORIZON Digital Economy Research,
University of Nottingham

2. • In the public eye – public interest in Internet Mediated Research
• Lessons from history – controversy and public backlash
• Ethics requirements
– Public-private domain distinction
– Confidentiality and Security
– Valid informed consent
– Withdrawal and debriefing
– Scientific value and potential harm
• Ethics by design – Privacy protecting architectures
• Conclusions
Overview

3. • For better of for worse, internet mediated research draws
media attention
• Association with headline-leading companies like e.g.
Google, Facebook
• Association with topic buzz-words, e.g. Big-Data
• Promise of giving quantitative approach to social science
questions that are important for policy issues
– Evidence based policy
In the public eye

4. • So far the public attention has resulted in
– Digital Economy identified as priority area for future
economic growth
– Increased research funding
• What could possibly go wrong?
In the public eye

5. News media love controversy!
You are being manipulated!

6. News media love controversy!
All your secrets are revealed!

7. Lessons from history: GM crops
In the 1990s, Bio-tech and Genetic Manipulation ruled headlines
•1990: Human Genome Project started
•1994: First GM crop approved for sale in US
•1997: Dolly the sheep cloned
•1998: EU stops further approval of GMOs

8. Lessons from history: GM crops
What went wrong?
• Loss of public trust in regulatory institutions, scientists and
industry
– Failure to address people’s fears about
unintended/unpredictable side effects.
– Failure to address transformative nature of technology on
society and social structures
– Failure to take due account of public concerns about the
motives of those developing the technology and the
regulatory frameworks.
• Dismissive attitude towards ‘irrational’ public concerns,
focusing on educating people with facts and information.

9. Resulting policy changes
• Responsible Research and Innovation (RRI) agenda
– Focus research and innovation to achieve social benefit
– Consistent, ongoing involvement of society, including
public & NGOs
– Assess and prioritize social, ethical and environmental
impact, risk and opportunities alongside technical and
commercial
– Develop oversight mechanisms to anticipate and manage
problems and opportunities
– Openness and transparency as integral components of
research and innovation
Impact assessment exercises

10. • Code of Human Research Ethics (BPS 2013)
1. Respect for the autonomy and dignity of persons
2. Scientific value
3. Social responsibility
4. Maximising benefit and minimising harm
• Challanges for Internet Mediated Research
1. Public-private online domain distinction
2. Confidentiality and security of online data
3. Procedures for obtaining valid informed consent
4. Procedures for debriefing and right-to-withdraw
5. Implications for scientific value and potential harm
Ethics requirements and
challenges for IMR

11. • Any data that was clearly derived fro, specific online
communications will always be experienced as intimate and
personal by the person who posted it.
• Legal distinction between public and private domains is
irrelevant for personal experience of citizens.
• High level of trust in the researchers is required to make
people feel comfortable with research on their data.
Public-private domain distinction

12. • Anonymization is one of the most basic steps for
maintaining confidentiality, showing respect and gaining the
trust of research participants.
• Anonymity is even more important when dealing with social
media posts where access to the raw source data cannot be
controlled by the researcher.
• Wealth of mineable secondary information sources means
any hint at identity of participant can lead to de-
anonymization.
Confidentiality and online security

13. Valid informed consent
• Core value to respect autonomy and dignity of persons.
• Probably the most frequently violated principle
– unread, unintelligible terms-of-use
• Obtaining true valid consent from authors of social network
posts is:
– a technical and potentially labour intensive challenge
– goes a long way towards establishing a conscientious and
trustworthy reputation.

14. • Participation provides deeper understanding of a study
• Right to withdraw supports validity of consent
• If the nature of the study requires that participant must be
naïve of the true purpose, debriefing and right to withdraw
are crucial for valid consent.
• Challenges for research with remote interaction with
participants:
– How to know if participants paid attention to debriefing?
– How to facilitate right to withdraw without breaking
anonymity
Withdrawal and debriefing

15. • Failure of dealing with these questions in a thorough and
transparent manner produced the public backlash in the GM
crops controversy.
• Controversies over social responsibility are threatening to
become a recurring theme in the popular media:
– “Facebook reveals news feed experiment to control
emotions”
– “OKCupid experiments with ‘bad’ dating matches”
Scientific value and potential harm

16. • Encourage compliance with ethical research protocols by
making it as easy as possible
– provide tools that are intrinsically privacy-respecting.
• Especially important for IMR where much of the research is
done by corporations or other groups that lack ethical review
board structures.
• Three such tools are:
– PRISONER (Privacy-Respecting Infras- tructure for Social
Online Network Experimental Research) architecture
(Hutton et al. 2012)
– Dataware system (Mortier et al. 2013)
– The Ma3tch (autonomous anonymous analysis) technology
(Kroon 2013)
Privacy protecting architectures

17. • Internet Mediated Research is receiving a greater level of
media scrutiny than most other types of research.
• There are still many uncertainties around aspects of IMR
ethics
• This combination raises the risk for triggering a controversy
and public backlash similar to the GM crops in Europe in the
1990s.
• To avoid such a controversy it is essential to retain the
confidence and trust of the public which depends heavily on
the use of responsible safeguards for privacy and ethical
treatment of human data.
Conclusion

18. Thank you
For more information on this topic, visit
http://casma.wp.horizon.ac.uk/

19. The PRISONER architecture

20. Dataware

21. Ma3tch