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Ethics and research by young people

Ethics and research by young people. Mary Kellett m.kellett@open.ac.uk. Introduction. Informed consent Confidentiality and anonymity Absence of harm Deception and coercion Storage and ownership of data Roles and responsibilities. Levels of ‘consent’. Third party consent Assent

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Ethics and research by young people

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  1. Ethics and research by young people Mary Kellett m.kellett@open.ac.uk

  2. Introduction • Informed consent • Confidentiality and anonymity • Absence of harm • Deception and coercion • Storage and ownership of data • Roles and responsibilities

  3. Levels of ‘consent’ • Third party consent • Assent • Consent by proxy • ‘informal’ consent • ‘formal’ consent • Informed consent • Ongoing consent • Circle of consent

  4. Confidentiality and anonymity • Confidentiality: • definition • exclusions • Anonymity • Definition • Blurred boundaries • How far can you go to ensure anonymity? • Respect for participants

  5. Absence of harm • Participant wellbeing is paramount • physical • emotional • mental

  6. Deception and coercion • What is deception in research terms? • tricking participants • not disclosing true research purpose • covert observation • What is coercion in research terms? • suggesting rewards/favours as inducements • threats of adverse consequences

  7. Storage and ownership of data • Secure, locked storage • Who has access to the data? • Who owns the data? • Decisions about destroying data • Video data

  8. Adult supporter help child researchers arrive at ethical research questions withdraw support from unethical projects don’t make rash promises help child researchers to keep projects feasible ensuring wellbeing of child researcher clear the way with gatekeepers disclosure of abuse support child researchers with secure data storage Child researcher ethical research question informed / ongoing consent cause no harm or distress no deception disclosure of abuse Secure data storage Share findings with participants Ethical roles and responsibilities

  9. Examples of questionable practice • Involving participants without their knowledge or consent • Coercing them to participate • Withholding information about the true nature of the research • Persuading participants to engage in acts which diminish their self esteem • Invading privacy • Exposing individuals to physical, mental or emotional stress • Withholding a benefit in order to prove a causal link in a comparison group • Lack of consideration and/or respect for participants

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