Research Ethics in the Social Sciences & Humanities

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Research Ethics in the Social Sciences & Humanities. Dean Sharpe, Ph.D. Office of Research Ethics University of Toronto June, 2009. Outline. Research ethics framework & culture Proportionate review & risk Preparing a protocol: research ethics issues. History. Nuremberg Code (1947) - PowerPoint PPT Presentation

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  • Research Ethics in theSocial Sciences & HumanitiesDean Sharpe, Ph.D.Office of Research EthicsUniversity of TorontoJune, 2009

  • OutlineResearch ethics framework & cultureProportionate review & riskPreparing a protocol: research ethics issues

  • HistoryNuremberg Code (1947)WWII crimes against humanity

    Declaration of Helsinki (1964)World Medical Association, drug trials

    Belmont Report/Common Rule (1979)Research scandals (e.g., Tuskegee syphilis study)Tri-council Policy Statement (1998, 2009?) & MOUCanadian research council guidelines

  • Tri-council Policy Statement (TCPS-1 & draft TCPS-2)

    Research ethics: key principles and issuesRespect for human dignityAutonomy . . . e.g., consentWelfare . . . e.g., privacy, confidentialityEqual moral status . . . e.g., vulnerabilityRisks versus benefits

    System of research participant protectionPrior review of protocols: Office of Research Ethics (ORE) and Research Ethics Boards (REBs)

  • REBsQuorum5 members, women & men2 broad knowledge of methods or areas1 knowledgeable in ethics1 no affiliation with the institution1 knowledgeable in relevant law (biomed research)

    University of Toronto: 2 boardsSocial Sciences, Humanities & Education (& management, law, engineering, . . .)Health Sciences

  • Research Ethics Culture: Integral Part of Scholarly ProcessExcellence in research & excellence in research ethics go hand in hand; not about authorityMandated by research funding bodiesResearchers: budget for it, have models on hand, educate, supervisepush back if reviews ill informedReviewers: informed, principles based, tightly reasoned open to counter-argument

    Myth that ethics/scholarship issues totally separatecompelled to comment if groups/topics/methods unclear, contradictory; researcher expertise/experience inadequate; supervision inappropriate

  • Research Ethics Culture: Inter-disciplinarityMyth that REBs fixated on biomedical modelUT has dedicated board for SSH: researchers from psych, anthro, soc, polisci, educ, mgmtreview psych, anthro, soc, polisci, educ, mgmt...no over-weaning interest in or sympathy for biomedical model

    Still, inter-disciplinarity not to be taken lightlyNot radically relative/anything goesNot radically discipline-centric/cheap shotsGood practices by those with relevant expertiseConceivablynew insights into own & others disciplines

  • Research Ethics Culture:Evolution & DevelopmentTCPS-2More open/inclusive definition of research: disciplined, systematicnot generalizableNew qualitative research chapterexplicitly acknowledges ongoing consent process, range of methods, roles, media, open-ended/emergent designsClearer explanations of exemption, delegation/reporting

    Group- & methods-specific guidelinesAboriginal groupsOCAP agreementsCommunity-based researchconception to completion: consultative, iterativeexplicit agreements on principles

  • Research Ethics Culture:Proportionate ApproachExempt: program evaluation, standard professional practice/training/service learning, reflective practiceMay be high risk; discipline-specific guideline/codes help

    Delegated: minimal risk, on par with daily life (but see risk matrix) ~90% of protocols in SSHUndergrad: Delegated Ethics Review CommitteesGrad & faculty: review by 1 REB member

    Full REB: Greater than minimal risk (but see risk matrix)

    Continuing: annual renewal, amendment, completion

  • Proportionate Review & RiskGroup vulnerability: diminished autonomy . . . Informed? Free?Physiological (e.g., health crisis, service dependence)Cognitive/emotional (e.g., age, capacity, recent trauma)Social (e.g., stigma, under the table, undocumented)

    Research risk: probability & magnitude of reasonably foreseeable, identifiable harmMethods invasiveness & data sensitivityPhysiological (e.g., new diagnoses, side effects)Cognitive/emotional (e.g., stress, anxiety)Social (e.g., dismissal, deportation, reporting, subpoena)

  • Proportionate Review &Risk Matrix

    Review Type by Group Vulnerability & Research Risk

    Research RiskGroup vulnerabilityLowMedHighLowDel.Del.FullMedDel.FullFullHighFullFullFull

  • Preparing a ProtocolForms, Deadlines, Guidelineswww.research.utoronto.ca/ethics/Thesis proposal should be approved by thesis committeeFollow model protocol; work closely with supervisorUse resources: ORE website; workshops/seminars; UT guides on consent docs, data security, key informant interviews, participant observation, deception/debriefing, student participant poolsEach section brief, clear, consistent, focused on ethicsAppend all recruitment & consent scripts, flyers, lettersUndergrad submission: to local DERC coordinatorGrad/faculty submission: dept. sign off, then to OREDelegated: weekly, Mondays by 5pm (4:30pm in July/Aug)Full REB: monthly (except Aug), check website for deadlines

  • Research Ethics Issues:Free & Informed ConsentQuality of relationship from first contact to endEmphasis on process: not signature on paper; not jargony; not contractual/legalistic (I the undersigned I understand that..I understand that..I understand that..)Group-appropriate, plain language: who researcher is, affiliation, what theyre studying, what participation would involve, voluntariness, confidentiality(check readability)Variations, as appropriate, with clear rationale:Verbal (literacy, criminality, cultural appropriateness), phone, webAge-appropriate assent, alternate (e.g., parental) permissionDeception & debriefingAdmin consent, community consultation, ethics approval

  • Research Ethics Issues:Privacy & ConfidentialitySome projects: name participants, attribute quotes; most projects: protect personal infoConsider collection, use, disclosurelife of projectRecruitment (e.g., snowball, distribution/disclosure?)Data collection (e.g., notes/recording; 1-on-1/groups)Data management plan (i.e., identifiers/content; physical & tech safeguards, retention/destruction) sensitivity, richness, standards of discipline?Publication: pseudonyms, generics, aggregatesLimits: duty to report (abuse, suicidality, homicidality), subpoena (criminality)

  • Research Ethics Issues:Conflict of Interest

    Commercialization, investment but typicallyrole-based: concurrent dual roles with power overe.g., researcher + instructor/minister/managerreal or perceived, should inform REB and participants of non-research aspectsmay have to managee.g., not recruit directly, stay blind to participation until after relationship endsMay have to abandon one interest

  • Research Ethics Issues:Inclusion/Exclusion Criteria

    Equity, justicefair distribution of benefits/burdensjustify basis for including/excludingstudents sometimes have trouble with complex constructs (e.g., sex/gender/sexual orientation, race/ethnicity/culture)

    State consistently throughout protocol sections & appendices (e.g., recruitment, consent)

  • More Informationwww.research.utoronto.ca/ethics/Information Assistant, Office of Research Ethicsethics.review@utoronto.ca, 6-3273

    Coordinator, Social Sciences, Humanities, Educationsshe.coordinator@utoronto.ca, 6-5606

    Coordinator, Continuing Review (renewals, completions)marianna.richardson@utoronto.ca, 8-3165

    Research Ethics Analyst: Consultation Service & Undergrad Liaison dario.kuzmanovic@utoronto.ca, 6-3608

    Research Ethics Officer, Social Sciences, Humanities, Educationdean.sharpe@utoronto.ca, 8-5585

  • ReferencesTri-Council Policy Statement (TCPS), Draft TCPS 2nd Ed. for consultation, and TCPS tutorialhttp://pre.ethics.gc.ca/eng/policy-politique/tcps-eptc/http://pre.ethics.gc.ca/eng/policy-politique/initiatives/draft-preliminaire/pre.ethics.gc.ca/english/tutorial/

    UT/ORE websitewww.research.utoronto.ca/ethics/see UT guidelines on key informant interviews, participant observation, deception and debriefing, data security standards . . .

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