Ethical Guidelines in Research: Understanding and Applying Best Practices

1. Ethics & Communication Research Neuman & Robson Chapter 3

2. Reminder: Labs today in Library • Lab in Bennett Library computer lab room 4009 • Guest instructor: Sylvia Roberts

3. New Ethical Guidelines • History: idea of human subject protection relatively new • Medical & Psychological Experiments • Examples Questionable Ethics in research • experiment • Milgrim obedience study • http://en.wikipedia.org/wiki/Milgram_experiment • Zimbardo –Stanford prison experiment • www.prisonexp.org • Another Zimbardo link • Tuskegee syphilis study • www.hsc.virginia.edu/hs-library/historical/apology/report.html

4. Web Sites • Tri-council guidelines for ethical treatment of human subjects (Canada) • Social Sciences & Humanities Research Council of Canada (SSHRC) SSHRC homepage • Office of Research Ethics at SFU • Reading List for aboriginal research ethics • http://www.ecdip.org/ethics/readings.htm

5. Why Be Ethical? (Motivations) • Personal • Researcher’s scholarly values • Guides to Best Practices, • codes of ethics --professional associations • Legislation • Requirements of Funding Agencies • But even with good intentions researchers can make mistakes • Stanford Prison experiment, an ethical controversy • http://www.prisonexp.org Stanford Prison Experiment “debriefing”: One of the most abused prisoners, #416, and the guard known as "John Wayne", who was one of the most abusive guards, confront each other in an "encounter session" two months later.

6. Motivations for unethical research • Career pressure • Ego (“knowing the right answer”) • Political agendas (ex. P. Rushton on race) • cheaper, faster, career advancement, prestige, etc. • Ignorance etc…

7. Ethical Issues: stakeholders scientific community “the subject” individual researcher society/the public sponsors/funding sources legal authorities/government

8. Scientific Misconduct research fraud falsification or distortion of data or methods fabrication Plagiarism such as presenting the ideas or words of another as one's own Failure to give credit (citation plagiarism) SFU tutorial on plagiarism http://www.lib.sfu.ca/help/tutorials/plagiarism-tutorial Violation of ethical standards ex. Failure to ask for informed consent, conducting research on underage children or special populations without proper consent…(etc.) Falsifying data & Suppression of findings (non-publication of important findings)

9. Web Sites: Research Ethics Guidelines in Canada & at SFU • Tri-council guidelines for ethical treatment of human subjects (Canada) • Social Sciences & Humanities Research Council of Canada (SSHRC) SSHRC homepage • Office of Research Ethics at SFU

10. Informed Consent Statements(some points to cover) • purpose & procedure of study • Potential risks and discomfort • Provisions for anonymity and confidentiality • researcher’s address and source of information • statement of voluntary nature of participation and ability to withdraw at any time • alternative procedures • Provisions for compensation (or not) • offer to provide summary of findings • Sample form from SFU (Office of Research Ethics)

11. Examples of Scientific Misconduct: Fabricating or “Fudging” Data Canadian Example: Dr. R. Chandra (Memorial University) Seniors’ memory and multivitamins Infant allergies & baby formulas No evidence of health benefits, no data-- BUT Chandra held the patent on the multivitamins Other examples: http://www.onlineethics.org/Education/precollege/scienceclass/sectone/chapt4/cs1.aspx http://www.onlineethics.org/Education/precollege/scienceclass/sectone/chapt4/cs2.aspx

12. Deception & InjusticeTuskegee syphilis study • “Depression-era U.S. poster advocating early syphilis treatment. Although treatments were available, participants in the study did not receive them.” • http://www.onlineethics.org/cms/9716.aspx#overview • Response: Belmont Report: respect for persons, beneficence and justice • Deception (lies), withholding treatment, racism? • Another website on the history of the study • http://www.brown.edu/Courses/Bio_160/Projects2000/Ethics/TUSKEGEESYPHILISSTUDY.html

13. Other forms of scientific misconduct • Failure to share credit • R. Franklin and discovery of DNA • suppression of unpopular research projects & misuse of incomplete findings • XYY controversy—genetic screening of newborns • Suppression of findings • “Love Canal”—keeping knowledge of toxic waste site secret & putting publics in danger to protect corporations

14. Ethics & LegalityTypology of Legal and Moral Actions in Research Both Moral and Legal Ethical Illegal Only Immoral Only Illegal Legal Both Immoral and Illegal Unethical Source: figure adapted from Neuman (2000:91)

15. Ethical Treatment of Research SubjectsTypes of Harm physical harm psychological abuse, stress, loss of self-esteem legal harm other possible forms of harm financial, G.P.A. , etc. creation of inequities denial of treatment placebos in experimental research

16. Milgrim obedience study • “Illustration of the setup of a Milgram experiment. The experimenter (E) convinces the subject ("Teacher" T) to give what he believes are painful electric shocks to another subject, who is actually an actor ("Learner" L). Many subjects continued to give shocks despite pleas of mercy from the actors.” • http://en.wikipedia.org/wiki/Image:Milgram_Experiment_v2.png

17. Zimbardo –Stanford prison experiment Stanford Prison Experiment “debriefing”: One of the most abused prisoners, #416, and the guard known as "John Wayne", who was one of the most abusive guards, confront each other in an "encounter session" two months later. • www.prisonexp.org • Another Zimbardo link • Film clips from Quiet Rage

18. Newer Approaches Raise More Nuanced Concerns • Cultural Taboos & rights • sharing secret or sacred knowledge • Owning one’s stories • Institutional Constraints vs. Subject’s wishes • What if subject WANTS to be identified? • Practical Complexities & Political or Moral Commitments • Counting Refugees Pansy Napangardi painting a Dreaming

19. Other Examples: Portrayals of Victims, Photography of Street Life & things • Tip Sheet on how to portray famine victims with dignity (Reuters) • http://www.alertnet.org/thefacts/reliefresources/112669600053.html • Photography of Street Life in Canada • The Duclos Affair & Quebec law • http://www.montrealmirror.com/2005/080405/news1.html • Photographing architecture or public art (national variations in intellectual property rights) Fatou Ousseini lies with her malnourished one-year-old son Alassa Galisou at an emergency feeding clinic in the town of Tahoua in northwestern Niger (Reuters_

20. Deception and covert observation formerly common practices e.g. Laud Humphrey Tearoom Trade http://web.missouri.edu/~philwb/Laud.html Problems: Defies Principle of voluntary INFORMED consent Potential for harm to subjects

21. Who can give consent? Participation must be voluntary; not coerced Not applicable to special populations e.g. military personnel, students, prison inmates, mentally challenged not capable of giving true voluntary informed consent because: can’t make the decision (mental incapacity, immaturity) not truly “free” (could be directly or indirectly coerced, or cannot refuse) for example, the military and total institutions, like prisons But how much information is given for ‘informed consent’ varies by type of method Ex. often experimental research requires deception Potential benefits of research must outweigh risks

22. Privacy, Anonymity, Confidentiality privacy: a legal right (note : public vs. private domain)--even if subject is dead anonymity: subjects remain nameless & responses cannot be connected to them (problem in small samples) confidentiality: subjects’ identity may be known but not disclosed by researcher, identity can’t be linked to responses

23. Ethics & the Scientific Community:Codes of Ethics guide, control & regulate members protect researchers from outside pressures protect others from irresponsible practitioners

24. Ethical Issues related to Research Sponsors balancing allegiances “cooking” results unintentionally (the Lake Wobegon Effect) biases from limits on conditions & resources suppressing findings concealing the sponsor

25. How Society & Government Shape Research legislation “politically correct” or “safe” topics control of access to data (gatekeepers) biases in government statistics issues: censorship, public opinion national security public good funding priorities of government granting agencies

26. Ethical Debates about Research Findings “models of relevance” no net effects, positive & negative effects, special constituencies control over use of findings control of raw data especially subject information academic freedom autonomy of research

27. Legal Requirements & Ethical Research? Should researchers always respect confidentiality? But laws require reporting of information about plans to commit illegal acts (example: assisted suicide) Russel Odgen Controversy (typo in textbook) Link to SFU decision: http://www.sfu.ca/~palys/ogden.htm

28. Ethics and Basic Ideas about Science debates about whether science is: objective opposed to subjective, logical, rational not arbitrary value free amoral, neutral, not prejudiced unbiased nonrandom error eliminated, not influenced by personal or cultural values

29. Ethics & Practical Aspects of Research Relations: Colleagues & Bosses and the Research Process getting along with others as part of research main source of conflict: sharing recognition & workload

30. Common types of relationships (university researchers) student-student (teamwork, study groups, classmates) student-professor (class relationships, research assistantships, teaching) research &/or authorship teams (junior & senior authors, questions of recognition and remuneration) employee/employer relationships (authorship, remuneration,) sponsors/funding organizations Controversy about influence of corporate funders: U. Toronto, pharmaceutrical funding & Dr. Nancy Oliveri http://www.ideacityonline.com/presenters/nancy-olivieri/

31. Discussion of Assignments