Ethics around conducting studies
involving humans
Jettie Hoonhout and Aaron Houssian
Philips Research
November 2013
For the sake of science and knowledge:
is everything allowed?
• Including pictures/video clips of your participants in a
presentation of your study?
• Removing data from outliers in your dataset?
• Submitting a CHI paper that is based on data collected by
one of your interns, under your name?
• Telling your participants that your objective is A, whereas
you actually are collecting data on B?
• Using data from an old study, for new research purposes?
• In a study on work stress, involving e.g. personality and
depression tests, you plan to invite colleagues
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Little Albert, 1920
Test to see if fear is an innate or conditioned response
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The Tuskegee Syphilis Study, 1932-1972
• Sponsored by the U.S. Department of Health.
• Studied the effects of untreated syphilis in 400 African American men.
• Researchers withheld treatment even when penicillin became widely
available.
• Researchers did not tell the subjects that they were in an experiment.
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Staged Experiments on Obedience to Authority
Yale University, Milgram, 1961-1962
Fake “Learner”
Experimenter
Subject - “Teacher”
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Stanford prison experiment (Zimbardo, 1971)
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Growing awareness and professionalization
• The Nuremberg Code for research on humans is adopted in 1947.
• Medical profession
– Declaration of Helsinki World Medical Association, Helsinki
Declaration for short. Ethical principles for research on humans.
Revised several times, most recently in 2001
– Belmont report (1979)
• Psychological profession
– American Psychological Association (APA)
– European Federation of Psychologists
• Similar codes in other professions (e.g. Human Factors and Ergonomics
Society, ACM)
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The Belmont Report: Ethical Principles and
Guidelines for the Protection of Human Subjects of Research
• http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.htm.
• The Belmont Report identifies three fundamental moral principles that
are particularly relevant to research with humans.
• A. Respect for persons.
– (a) honor the participants’ right to make their own decisions – their
autonomy – and (b) to protect potential participants who have a
diminished ability to make important decisions.
• B. Beneficence.
– avoid harming human participants
– studies should maximize possible benefits and minimize possible
harms to individuals as well as society at large.
• C. Justice.
– risks and benefits should be spread equitably across society
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Key elements in conducting test on humans in an
ethical way:
• Voluntary consent is absolutely essential
– Informing participants beforehand, obtaining their consent
– Are participants able and willing to give consent?
– Participant must be free to withdraw at any time
• Scientific value of test, including good study design
– Avoid unnecessary testing, unnecessary discomfort
• Is study really necessary, or can information be obtained in other way?
– Risk weighted against importance of the problem
• Facilities and means to protect participants
– Data is processed anonymously (and how is that with colleagues??)
– Good aftercare (debriefing, but possibly more!)
– A participant should leave the test feeling no worse than when
starting (possibly even feeling better)!!
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Summary
• Participants are under no obligation, after having been informed about
the nature of the test, to participate, and they have the right to
discontinue participation at any time during the test.
• Informing the participants in a proper and clear way, making clear their
rights, is not just an ethical obligation – it is also a means to make
clear to the participants that the researcher is treating them with
respect and valuing their participation.
• Anonymity
• Deception – yes or no?
• Discomfort, pain, embarrassment (Milgram’s famous experiments would
now be impossible)
• Debriefing, possibly even after-care
• Special groups – e.g. children, handicapped, elderly
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New applications and domains, new issues…
• Video recording usage of a device in public, without telling?
• Someone walking around all day with a recording device – Google glass
– by way of a personal diary?
• Use of Facebook materials?
• Persuasive technologies?
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Trouble at the lab*
From the Economist, issue 19 October 2013:
“I SEE a train wreck looming,” warned Daniel Kahneman, an eminent
psychologist, in an open letter last year. The premonition concerned
research on a phenomenon known as “priming”. Priming studies
suggest that decisions can be influenced by apparently irrelevant
actions or events that took place just before the cusp of choice. They
have been a boom area in psychology over the past decade, and some
of their insights have already made it out of the lab and into the toolkits
of policy wonks keen on “nudging” the populace.
See also Ioannidis, J. (2005), Why most published research findings are
false. Most downloaded technical paper from PLoS Medicine.
* http://www.economist.com/news/briefing/21588057-scientists-think-science-self-correcting-alarmingdegree-it-not-trouble
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Ten commandments in research ethics*
1. Be honest.
2. Be fair.
3. Do no harm.
4. Do good research.
5. Know and follow the rules.
6. Bad rules should be changed, not broken.
7. Be a good citizen.
8. When in doubt, ask questions.
9. Listen to the still, small voice of your conscience, especially when it’s
being overwhelmed by the cacophony of stress.
10. If you suspect unethical behavior, proceed cautiously.
*After Kenneth D. Pimple
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Some references
• ACM: http://www.acm.org/about/code-of-ethics
• APA: http://www.apa.org/ethics/code/index.aspx
• http://www.onlineethics.org/home.aspx
• What is Ethics in Research & Why is it Important? by David B. Resnik:
http://www.niehs.nih.gov/research/resources/bioethics/whatis/
•
Burmeister, O.K. 2001. HCI Professionalism: ethical concerns in usability engineering.
http://crpit.com/confpapers/CRPITV1Burmeister1.pdf
• Ethics in HCI, CHI2001 Panel documentation
http://molar.crb.ucp.pt/cursos/1%C2%BA%20e%202%C2%BA%20Ciclos%20%20Lics%20e%20Lics%20com%20Mests/Inform%C3%A1tica%20de%20Gest%C3%A3o
/2%C2%BA%20Semestre/%C3%89tica%20e%20Deontologia/Papers%20para%20%C3%
89tica/Ethics%20and%20HCI%20.pdf
• Website Usability and User Experience – STC Community (overall a useful website with
many interesting resources), http://www.stcsig.org/usability/topics/ethics.html
• Mackay, W.E. Ethics, lies and videotape…
http://www.sigchi.org/chi95/proceedings/papers/wem1bdy.htm
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