Session 11: Ethics in Research

1. Session 11: Ethics in Research ED PS 6030/ELP 6030/SP ED 6610 Introduction to Research Design Fall 2004

3. Institutional Review Board (IRB) Every institution where an individual might conduct research must have an IRB Most school districts have some type as well as Universities Primary goal is to protect the rights of research participants Some consider a goal to be to maintain integrity of research conducted through the institution Federal Government reviews IRBs and if finds problems will order cease and desist All research must be halted until further notice (exceptions are made for studies that would be harmful to abruptly stop) Not actually included in Federal statute language Duke, 1999. Last year 1 in TX, 1 in CA?Not actually included in Federal statute language Duke, 1999. Last year 1 in TX, 1 in CA?

5. Consent Informed consent Subjects must know potential risks, benefits, conditions of participation, and ability to withdraw without penalty If consent is not informed, it can be as bad as (or worse than) not getting consent at all Two types Direct or Substitute (3rd party) If the person has a legal guardian, need substitute When in doubt, ask for permission Consent should always be obtained in writing IRBs not too keen on oral consent. In �he said, she said� if person feels harm, persecution, or coercion, you�ll be in trouble.IRBs not too keen on oral consent. In �he said, she said� if person feels harm, persecution, or coercion, you�ll be in trouble.

6. Elements of Consent Capacity Ability: individual is competent enough to understand, evaluate, and make a decision of whether to participate or not Age: > 18 or emancipated minor Information Is it complete/comprehensive and fully understood? Voluntariness Subjects have the choice to participate or withdraw and are aware of this choice Capacity: need to consider both. What about 17 yr old HS senior? Get parents� as well as his/hers Informed consent is also important in treatment, not just research. A person should be given full information when weighing the potential options for treatment. This applies to medication, education, IEPs, etc. Consent can always be withdrawn�it is never permanent Example from U IRB is on WebCTCapacity: need to consider both. What about 17 yr old HS senior? Get parents� as well as his/hers Informed consent is also important in treatment, not just research. A person should be given full information when weighing the potential options for treatment. This applies to medication, education, IEPs, etc. Consent can always be withdrawn�it is never permanent Example from U IRB is on WebCT

7. Harm Subjects must be protected from harm, or at the least fully informed about the potential costs and benefits resulting from the harm Research that is physically or psychologically dangerous is generally considered unethical Care needs to be taken with subjects who are, or consider themselves to be, relatively powerless Children, elderly, w/ disabilities Dangerous-inducing heart attacks, injecting with Plutonium, withholding Syphilis treatment. Psych harm�little Albert, gender identity studies.Dangerous-inducing heart attacks, injecting with Plutonium, withholding Syphilis treatment. Psych harm�little Albert, gender identity studies.

8. Harm (cont) There is no prespecified level for the unethical threshold of harm (e.g., 36 degrees or 12 pounds) Consideration is in the cost/benefit ratio In general, make sure the benefits (from the study) outweigh the costs (to individual participants)

9. Privacy Sensitivity of topic &/or data Can responses/results affect the subject�s life if known by others How public/private is the setting? Public display of the data Personally identifiable information should be removed or changed

10. Deception Often tied to the informed part of consent Omission: withhold information Commission: provide false information I.e., lying Establishing false intimacy: subject feels a high degree of comfort because he/she does not know is �on the record� Using accomplices: someone helping the researcher that the subject doesn�t know is helping

11. Deception (cont) Sometimes a degree of deception is necessary IRB needs to regulate When it is, subjects MUST be debriefed after the study Dehoaxing: researcher convinces (tells) each subject who was deceived that they were, in fact, deceived Desensitization: a systematic process of demonstrating that there was deception Suggest that behavior was a result of the circumstances Point out that subjects� behavior was not abnormal or unusual Necessary: avoid Hawthorne effect, compensatory rivalry, other threats to internal & external validity Dehoaxing. Think of an example? Candid Camera! Desensitization can be done orally too, but is more systematic.Necessary: avoid Hawthorne effect, compensatory rivalry, other threats to internal & external validity Dehoaxing. Think of an example? Candid Camera! Desensitization can be done orally too, but is more systematic.

12. Professionalism Cyril Burt Probably the most used nonexample of professional ethics Examples of unethical (by today�s standards) research abound Forging Reason why public presentation of data/results is important Trimming: smooth the data (change results for some subjects or eliminate them altogether) Cooking: only report findings that are supportive of the hypothesis Poor Cyril Burt. Not only misrepresented estimates & results, completely fabricated data, had a fictitious research assistant (for years)�who was getting paid off of a grant (no one�s sure what happened to the $) Scientific Sins Unethical standards�tough to judge old studies by today�s standards if the standards of their time were different. Milgram, Zimbardo. Some research was unethical (or questionable) at time it was done. WWII Germany in concentration camps. Tuskeegee. Injection of Plutonium into people. Poor Cyril Burt. Not only misrepresented estimates & results, completely fabricated data, had a fictitious research assistant (for years)�who was getting paid off of a grant (no one�s sure what happened to the $) Scientific Sins Unethical standards�tough to judge old studies by today�s standards if the standards of their time were different. Milgram, Zimbardo. Some research was unethical (or questionable) at time it was done. WWII Germany in concentration camps. Tuskeegee. Injection of Plutonium into people.

13. Publishing Same results/study should not be submitted/published in more than one place Dual publication: in more than one place Partial publication: parts of a single study as if they were separate studies Portions of one publication should not be reprinted in another without permission Copyright laws are in effect Authorship�inclusion and order should be based on contribution Trouble for Plagiarizing yourself? Not as plagiarizing, but as presenting as multiple works, when there is much overlap.Trouble for Plagiarizing yourself? Not as plagiarizing, but as presenting as multiple works, when there is much overlap.

14. Breaches of Integrity All professional organizations have a code of ethics which includes procedures for reporting and dealing with violations In cases of whistle-blowing, often the whistle-blower incurs as many or more negative repercussions than the person violating ethical practices Unless already has a good, well-known reputation Reputation often precedes researchers While there may be no overt repercussions, it may cost the person future jobs, funding, promotions, etc.

15. Ethics Video What is your reaction to this study? Do you think ethical practices were violated? How?What is your reaction to this study? Do you think ethical practices were violated? How?