Ethics around conducting studies involving humans

1. Ethics around conducting studies involving humans Jettie Hoonhout and Aaron Houssian Philips Research November 2013

2. 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

3. Little Albert, 1920 Test to see if fear is an innate or conditioned response

4. 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.

5. Staged Experiments on Obedience to AuthorityYale University, Milgram, 1961-1962 Fake “Learner” Experimenter Subject - “Teacher”

6. Stanford prison experiment (Zimbardo, 1971)

7. 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)

8. The Belmont Report: Ethical Principles andGuidelines 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

9. 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)!!

10. 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

11. 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 Facebookmaterials? Persuasive technologies?

12. Trouble at the lab* * http://www.economist.com/news/briefing/21588057-scientists-think-science-self-correcting-alarming-degree-it-not-trouble 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.

13. Ten commandments in research ethics* *After Kenneth D. Pimple 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.

14. 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