Ethics and research by Ethics and research by young peopleyoung people

Mary KellettMary Kellettm.kellett@open.ac.ukm.kellett@open.ac.uk

IntroductionIntroduction

Informed consentInformed consent Confidentiality and anonymityConfidentiality and anonymity Absence of harmAbsence of harm Deception and coercionDeception and coercion Storage and ownership of dataStorage and ownership of data Roles and responsibilitiesRoles and responsibilities

Levels of ‘consent’Levels of ‘consent’

Third party consentThird party consent AssentAssent Consent by proxyConsent by proxy ‘‘informal’ consentinformal’ consent ‘‘formal’ consentformal’ consent Informed consentInformed consent Ongoing consentOngoing consent Circle of consentCircle of consent

Confidentiality and anonymityConfidentiality and anonymity

Confidentiality:Confidentiality: definitiondefinition exclusionsexclusions

AnonymityAnonymity DefinitionDefinition Blurred boundariesBlurred boundaries How far can you go to ensure anonymity?How far can you go to ensure anonymity? Respect for participantsRespect for participants

Absence of harmAbsence of harm

Participant wellbeing is paramountParticipant wellbeing is paramount physicalphysical emotionalemotional mentalmental

Deception and coercionDeception and coercion

What is deception in research terms?What is deception in research terms? tricking participantstricking participants not disclosing true research purposenot disclosing true research purpose covert observationcovert observation

What is coercion in research terms?What is coercion in research terms? suggesting rewards/favours as inducementssuggesting rewards/favours as inducements threats of adverse consequences threats of adverse consequences

Storage and ownership of dataStorage and ownership of data

Secure, locked storageSecure, locked storage Who has access to the data?Who has access to the data? Who owns the data?Who owns the data? Decisions about destroying dataDecisions about destroying data Video dataVideo data

Ethical roles and responsibilitiesEthical roles and responsibilities

Adult supporterAdult supporter help child researchers arrive at help child researchers arrive at

ethical research questionsethical research questions withdraw support from unethical withdraw support from unethical

projectsprojects don’t make rash promisesdon’t make rash promises help child researchers to keep help child researchers to keep

projects feasibleprojects feasible ensuring wellbeing of child ensuring wellbeing of child

researcherresearcher clear the way with gatekeepersclear the way with gatekeepers disclosure of abusedisclosure of abuse support child researchers with support child researchers with

secure data storagesecure data storage

Child researcherChild researcher

ethical research questionethical research question informed / ongoing informed / ongoing

consentconsent cause no harm or cause no harm or

distressdistress no deceptionno deception disclosure of abusedisclosure of abuse Secure data storageSecure data storage Share findings with Share findings with

participantsparticipants

Examples of questionable Examples of questionable practicepractice

Involving participants without their knowledge or consentInvolving participants without their knowledge or consent Coercing them to participateCoercing them to participate Withholding information about the true nature of the Withholding information about the true nature of the

researchresearch Persuading participants to engage in acts which diminish Persuading participants to engage in acts which diminish

their self esteemtheir self esteem Invading privacyInvading privacy Exposing individuals to physical, mental or emotional Exposing individuals to physical, mental or emotional

stressstress Withholding a benefit in order to prove a causal link in a Withholding a benefit in order to prove a causal link in a

comparison groupcomparison group Lack of consideration and/or respect for participantsLack of consideration and/or respect for participants