"The Ethics of "The Ethics of Qualitative Research: Qualitative Research:

Negotiating the Negotiating the Nature of Closeness Nature of Closeness and the Closeness of and the Closeness of

Nature"Nature"Elizabeth PeterElizabeth Peter

Associate Professor, Faculty of Associate Professor, Faculty of Nursing, Member, Joint Centre for Nursing, Member, Joint Centre for

BioethicsBioethics

OverviewOverview

Background:Background: Research Ethics Research Ethics The nature of qualitative research The nature of qualitative research

InvasivenessInvasiveness Confidentiality & Privacy Confidentiality & Privacy Emergent Designs & the Emergent Designs & the

UnanticipatedUnanticipated Commentary (Judith Friedland)Commentary (Judith Friedland)

Nazi Experiments Nazi Experiments

Nuremberg TrialsNuremberg Trials

Nuremberg Code 1948Nuremberg Code 1948

““The voluntary consent of the The voluntary consent of the human subject is absolutely human subject is absolutely necessary.”necessary.”

Kant’s Categorical Kant’s Categorical ImperativesImperatives

Categorical Imperative ICategorical Imperative I “ “I ought never to act except in such a I ought never to act except in such a

way that I can also will that my way that I can also will that my maxim should become universal law.” maxim should become universal law.”

Categorical Imperative IICategorical Imperative II ““One must act to treat every person One must act to treat every person

as an end and never as a means only.”as an end and never as a means only.”

Tri-Council Policy Tri-Council Policy Statement Statement

An Ethic of Research An Ethic of Research Involving Human Involving Human

SubjectsSubjects1.1. The selection and achievement of The selection and achievement of

morally acceptable ends.morally acceptable ends.

2.2. The morally acceptable means to The morally acceptable means to those ends.those ends.

(Tri-(Tri-Council 2003) Council 2003)

Guiding Ethical Guiding Ethical PrinciplesPrinciples

Respect for Human DignityRespect for Human Dignity Respect for Free & Informed ConsentRespect for Free & Informed Consent Respect for Vulnerable PersonsRespect for Vulnerable Persons Respect for Privacy & Confidentiality Respect for Privacy & Confidentiality Respect of Justice & InclusivenessRespect of Justice & Inclusiveness Balancing Harms & BenefitsBalancing Harms & Benefits Minimizing HarmMinimizing Harm Maximizing Benefit Maximizing Benefit

Pythagorean Table of Pythagorean Table of OppositesOpposites

Male Male Determinate FormDeterminate Form Bounded Bounded ClearClear RestRest Straight Straight LightLight Good Good

Female Female Indeterminate Indeterminate

FormForm UnboundedUnbounded VagueVague MotionMotion CurvedCurved Dark Dark Bad Bad

Quantitative Research Quantitative Research

Qualitative Research Qualitative Research

Potential Risks: Potential Risks: InvasivenessInvasiveness

““The REB should adopt a proportionate The REB should adopt a proportionate approach based on the general approach based on the general principle that the more invasive the principle that the more invasive the research, the greater should be the research, the greater should be the care in assessing the research.” care in assessing the research.”

(TCPS, 1.6)(TCPS, 1.6)

Invasiveness Invasiveness

Establishing Rapport Establishing Rapport In-depth Interviewing In-depth Interviewing Sensitive Research Sensitive Research Vulnerable Participants/Subjects Vulnerable Participants/Subjects

Establishing Rapport?Establishing Rapport?

Many scholars “feel that most of Many scholars “feel that most of traditional in-depth interviewing is traditional in-depth interviewing is unethical, whether wittingly or unethical, whether wittingly or unwittingly. The techniques and unwittingly. The techniques and tactics of interviewing, they say, are tactics of interviewing, they say, are really ways of manipulating the really ways of manipulating the respondents.” respondents.”

(Fontana & Frey, (Fontana & Frey, 2000, p. 662)2000, p. 662)

Clinical vs. Research Clinical vs. Research Relationships Relationships

Clinical RelationshipsClinical Relationships Primarily focused on the needs of Primarily focused on the needs of

the patient/client the patient/client

Research RelationshipsResearch Relationships Primarily focused on the need of the Primarily focused on the need of the

researcher to collect data researcher to collect data

Safeguards Safeguards

Self-reflectionSelf-reflection Informed consentInformed consent Clarity!Clarity!

In-Depth InterviewingIn-Depth Interviewing

Invasiveness:Invasiveness:In-depth InterviewingIn-depth Interviewing

Can be intrusive psychologically, Can be intrusive psychologically, socially & politicallysocially & politically

Re-traumatization possibleRe-traumatization possible Cultural variations in responseCultural variations in response Emotional reactions in interviewer Emotional reactions in interviewer

possible alsopossible also

SafeguardsSafeguards

Interviewer expertiseInterviewer expertise Available follow-upAvailable follow-up Timing and length of interviewsTiming and length of interviews Emotional stability of participants Emotional stability of participants Nature of interview questionsNature of interview questions Opportunity to end interviewOpportunity to end interview

BenefitsBenefits

An opportunity to help others and to An opportunity to help others and to express emotions express emotions

Overall benefits—exploration of Overall benefits—exploration of uncharted area, potential to develop uncharted area, potential to develop understanding and interventionsunderstanding and interventions

Sensitive ResearchSensitive Research

““A sensitive topic is one which A sensitive topic is one which potentially poses for those involved potentially poses for those involved a substantial threat, the emergence a substantial threat, the emergence of which renders problematic for the of which renders problematic for the researcher and/or the researched researcher and/or the researched the collection, holding, and/or the collection, holding, and/or dissemination of research data.” dissemination of research data.”

(Lee & Renzetti, 1990, (Lee & Renzetti, 1990, p. 512) p. 512)

Types of Sensitive Types of Sensitive Research Research

Delves into some deeply personal experienceDelves into some deeply personal experience Is concerned with deviance or social control Is concerned with deviance or social control Impinges on the vested interests of powerful Impinges on the vested interests of powerful

persons or the exercise of coercion or persons or the exercise of coercion or dominationdomination

Deals with things sacred to those being Deals with things sacred to those being studied which they do not wish profaned studied which they do not wish profaned

((Lee & Renzetti, p.6)Lee & Renzetti, p.6)

SafeguardsSafeguards

Questioning of the social & scientific Questioning of the social & scientific value of the research: Should the value of the research: Should the research be conducted?research be conducted?

Expertise of the researcher Expertise of the researcher Knowledge of the sensitive subject Knowledge of the sensitive subject

Vulnerable Participants Vulnerable Participants

Vulnerable ParticipantsVulnerable ParticipantsExamples:Examples: Mentally incompetent peopleMentally incompetent people Members of oppressed groups, e.g. Members of oppressed groups, e.g.

people with mental illnesses, prisoners, people with mental illnesses, prisoners, homeless peoplehomeless people

Those traumatized, in pain, very illThose traumatized, in pain, very ill

*Vulnerable participants may or may not *Vulnerable participants may or may not be those involved in the research of be those involved in the research of sensitive topicssensitive topics

SafeguardsSafeguards

Consent by a surrogate decision Consent by a surrogate decision maker if necessarymaker if necessary

Questioning choice of participant Questioning choice of participant population: Could a less vulnerable population: Could a less vulnerable group be used? Does the research group be used? Does the research have social value? Will the group have social value? Will the group benefit from the results? benefit from the results?

Timing of research Timing of research Research evidence Research evidence

Confidentiality & PrivacyConfidentiality & Privacy

Naturalistic Observation Naturalistic Observation Focus Groups Focus Groups Report Writing Report Writing

Privacy: Naturalistic Privacy: Naturalistic ObservationObservation

““Naturalistic observation is used to study Naturalistic observation is used to study behaviour in a natural environment. behaviour in a natural environment. Because knowledge of the research can Because knowledge of the research can be expected to influence behaviour, be expected to influence behaviour, naturalistic observation generally implies naturalistic observation generally implies that the subjects do not know that they that the subjects do not know that they are being observed, and hence can not are being observed, and hence can not have given their free and informed have given their free and informed consent. Due to the need for respect for consent. Due to the need for respect for privacy, even in public places, privacy, even in public places, naturalistic observation raises concerns naturalistic observation raises concerns of the privacy and dignity of those being of the privacy and dignity of those being observed.” observed.”

(TCPS 2.5)(TCPS 2.5)

Privacy & Naturalistic Privacy & Naturalistic ObservationObservation

Private settings: homes, sometimes Private settings: homes, sometimes hospitals and workplaces, hospitals and workplaces,

Sacred settings: places of worshipSacred settings: places of worship

*Have all occupants provided consent? *Have all occupants provided consent?

*Have cultural differences been *Have cultural differences been considered?considered?

SafeguardsSafeguards

Consents of all observed individuals Consents of all observed individuals when potential for an infringement when potential for an infringement of privacy is high or a mechanism to of privacy is high or a mechanism to avoid observation of non-avoid observation of non-participantsparticipants

Understanding of cultural Understanding of cultural differencesdifferences

Confidentiality: Focus Confidentiality: Focus Groups Groups

There can be no guarantee of There can be no guarantee of confidentiality in focus groups confidentiality in focus groups

A breach in confidentiality could A breach in confidentiality could have serious consequences for a have serious consequences for a research participantsresearch participants

SafeguardsSafeguards

Reconsider the use of focus group Reconsider the use of focus group when researching a sensitive topic when researching a sensitive topic

Encourage confidentialityEncourage confidentiality Inform participants of limits to Inform participants of limits to

confidentiality confidentiality

Confidentiality: Report Confidentiality: Report WritingWriting

Rich data—revealing unique Rich data—revealing unique characteristics of individuals characteristics of individuals through words & picturesthrough words & pictures

Small samplesSmall samples Unique samples Unique samples

Safeguards Safeguards

Unique identifying information Unique identifying information should be removed or not gathered should be removed or not gathered at allat all

Increase sample & number of sitesIncrease sample & number of sites Consider implications personal, Consider implications personal,

social, & political: moral imagination social, & political: moral imagination Should all data be published? Should all data be published?

Emergent Designs & The Emergent Designs & The Unanticipated Unanticipated

Predicting HarmsPredicting Harms Research Ethics ReviewResearch Ethics Review

Predicting Potential Predicting Potential HarmsHarms

What could participants reveal? What could participants reveal? Suicidal/homicidal intentionsSuicidal/homicidal intentions Abuse to childrenAbuse to children Criminal ActivityCriminal Activity

*Research data can be subpoenaed *Research data can be subpoenaed

*Responsibilities of health *Responsibilities of health professionalsprofessionals

SafeguardsSafeguards

Understanding & disclosure of Understanding & disclosure of foreseeable harms foreseeable harms

Moral imaginationMoral imagination Legal adviceLegal advice

Emergent Designs: Emergent Designs: Research Ethics ReviewResearch Ethics Review

Ethical approval of research not yet Ethical approval of research not yet designed?designed?

Participant consent to research not Participant consent to research not yet designed?yet designed?

Predicting harms & benefitsPredicting harms & benefits

Suggestion: Staged approval processSuggestion: Staged approval process