Podcast
Questions and Answers
Which ethical principle focuses on ensuring the fair distribution of benefits and burdens of research?
Which ethical principle focuses on ensuring the fair distribution of benefits and burdens of research?
What is the difference between confidentiality and anonymity in research?
What is the difference between confidentiality and anonymity in research?
Which ethical principle is most closely related to the concept of informed consent?
Which ethical principle is most closely related to the concept of informed consent?
What is the main purpose of risk-benefit assessments in research?
What is the main purpose of risk-benefit assessments in research?
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Which of the following is NOT a potential benefit to participants in research?
Which of the following is NOT a potential benefit to participants in research?
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Which ethical principle is most directly related to the concept of minimizing harm to research participants?
Which ethical principle is most directly related to the concept of minimizing harm to research participants?
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Which of the following is a key aspect of the right to self-determination in research?
Which of the following is a key aspect of the right to self-determination in research?
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Why is it important to address confidentiality procedures in research?
Why is it important to address confidentiality procedures in research?
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Which of the following is considered a vulnerable group in research?
Which of the following is considered a vulnerable group in research?
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What is the role of an Institutional Review Board (IRB) in research?
What is the role of an Institutional Review Board (IRB) in research?
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What is a key responsibility of an IRB (Institutional Review Board)?
What is a key responsibility of an IRB (Institutional Review Board)?
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Which of the following is NOT typically assessed by an IRB when reviewing a research project?
Which of the following is NOT typically assessed by an IRB when reviewing a research project?
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According to the provided text, what ethical considerations are particularly relevant for research involving interviews?
According to the provided text, what ethical considerations are particularly relevant for research involving interviews?
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What is the primary purpose of the 'Guidance for the Design, Ethical Review, and Conduct of Genomic Research in Qatar' document?
What is the primary purpose of the 'Guidance for the Design, Ethical Review, and Conduct of Genomic Research in Qatar' document?
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What potential risks should researchers consider when conducting research involving human subjects?
What potential risks should researchers consider when conducting research involving human subjects?
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Which of the following best describes the principle of justice in research ethics?
Which of the following best describes the principle of justice in research ethics?
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What is a potential ethical issue associated with research involving observations?
What is a potential ethical issue associated with research involving observations?
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What is the main purpose of ethical standards in research involving human subjects?
What is the main purpose of ethical standards in research involving human subjects?
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Which of the following are considered vulnerable groups in research?
Which of the following are considered vulnerable groups in research?
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What is the main purpose of debriefing sessions after data collection in research?
What is the main purpose of debriefing sessions after data collection in research?
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Why is obtaining informed consent crucial in research involving vulnerable groups?
Why is obtaining informed consent crucial in research involving vulnerable groups?
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Why is it important for researchers to offer referrals to participants, if needed, following research participation?
Why is it important for researchers to offer referrals to participants, if needed, following research participation?
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Which of the following is NOT a common ethical consideration in research involving human subjects?
Which of the following is NOT a common ethical consideration in research involving human subjects?
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Why are external reviews increasingly common before conducting research involving human subjects?
Why are external reviews increasingly common before conducting research involving human subjects?
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Which of the following is the MOST important reason for researchers to share study findings with participants after data analysis?
Which of the following is the MOST important reason for researchers to share study findings with participants after data analysis?
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What is the primary goal of ethical review boards in research involving human subjects?
What is the primary goal of ethical review boards in research involving human subjects?
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What is the primary purpose of a risk-benefit assessment in research?
What is the primary purpose of a risk-benefit assessment in research?
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What does 'informed consent' mean in the context of research?
What does 'informed consent' mean in the context of research?
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What is the significance of the Declaration of Helsinki?
What is the significance of the Declaration of Helsinki?
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What is the primary difference between anonymity and confidentiality in research?
What is the primary difference between anonymity and confidentiality in research?
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Why is it important to obtain a Certificate of Confidentiality (NIH) in research?
Why is it important to obtain a Certificate of Confidentiality (NIH) in research?
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What does the phrase 'Treatment of vulnerable groups' refer to in research?
What does the phrase 'Treatment of vulnerable groups' refer to in research?
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What is the role of external reviews in protecting participants in research?
What is the role of external reviews in protecting participants in research?
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Identify the ethical dilemma present in the Tuskegee Syphilis Study.
Identify the ethical dilemma present in the Tuskegee Syphilis Study.
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Which of these best describes the relationship between 'ethics' and 'morality' as presented in the text?
Which of these best describes the relationship between 'ethics' and 'morality' as presented in the text?
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What is a potential tension in conducting ethical qualitative research?
What is a potential tension in conducting ethical qualitative research?
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Which of these is NOT a potential tension mentioned in the text regarding ethical dilemmas in conducting research?
Which of these is NOT a potential tension mentioned in the text regarding ethical dilemmas in conducting research?
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Based on the information provided, what is an ethical dilemma specifically related to conducting qualitative research?
Based on the information provided, what is an ethical dilemma specifically related to conducting qualitative research?
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What is a key ethical consideration when conducting research in less well-resourced settings?
What is a key ethical consideration when conducting research in less well-resourced settings?
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What is a key ethical consideration when working with vulnerable populations in qualitative research?
What is a key ethical consideration when working with vulnerable populations in qualitative research?
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What is the ethical principle that emphasizes respecting the different voices and perspectives of research participants?
What is the ethical principle that emphasizes respecting the different voices and perspectives of research participants?
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Which of the following is a principle on which informed consent is based?
Which of the following is a principle on which informed consent is based?
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Study Notes
Ethical Considerations in Qualitative Research
- Qualitative research in Qatar necessitates adherence to ethical principles, particularly concerning vulnerable populations.
- Specific policies governing ethical conduct of qualitative research in Qatar should be reviewed.
- Ethical dilemmas and conflicts inherent in qualitative research need exploration.
Required Reading
- Green and Thorogood (2018) "Qualitative Methods for Health Research" (Chapter 4, pp. 83-106, 112; Chapter 1, pp. 3-28) is the required reading.
Student Learning Outcomes
- Understanding the principles guiding ethical conduct in qualitative research in Qatar, including considerations for vulnerable populations.
- Familiarity with ethical policies specific to qualitative research in Qatar.
- Exploring ethical dilemmas and conflicts pertinent to qualitative research.
Definition of Ethics
- Ethics is the disciplined study of morality, focusing on the distinction between right and wrong or good and bad.
Ethical Dilemmas and Conflicts
- Managing risks related to the research, including bias.
- Respecting diverse participant perspectives.
- Conducting research in resource-limited settings, accounting for potential conflicts of interest or lack of funding.
- Ethical dilemmas arise when study participant rights conflict with study requirements. Examples include: -Testing a treatment that prolongs life for patients with terminal dementia. -Testing low carb diets for improving cancer patient responses to chemotherapy.
Historical Background
- Key historical events raise ethical concerns in research:
- Tuskegee Syphilis Study (1932)
- Nazi medical experiments
- U.S. radiation experiments
- Experiments on children (1969) and pregnant women (1994)
- These examples underscore the importance of ethical oversight in research.
Codes of Ethics
- Key codes and reports relevant to research ethics:
- Nuremberg Code (response to Nazi atrocities)
- Belmont Report (1979)
- Declaration of Helsinki (1964)
- ANA Ethical Guidelines (1995)
- CNA Ethical Research Guidelines
- These guidelines establish standards for ethical research practice.
What are Ethical Guidelines?
- Good research practice considers professional standards, legal and statutory requirements, ethical principles, and the responsibilities of researchers.
- Research often involves tensions that aren't easily solvable by reference to codes of practice, particularly in health sciences studies where conflicting responsibilities to stakeholders exist.
- Theoretical approaches to research may differ in their understanding of researcher responsibilities.
Values in Research
- Science is rooted in social values, questioning if researchers have an obligation to do good science.
- The primary responsibility of researchers is to knowledge creation and perhaps their contribution to future generations of researchers.
- The secondary responsibility concerns the implications of research practices in society.
Differing Approaches to Ethical Values
- Weaker liberal view: Ethical values are relative and dependent on researcher professionalism; ethical standards vary across cultures.
- Liberal view: Research decisions are the researcher's autonomy based on conscience. Researchers should decide on topics, methodologies, and dissemination of findings.
- Critical view: Research should contribute to social justice and emancipation by examining existing social hierarchies.
Ethical Review
- Ethical practice varies across places, times, and disciplines.
- Question: Can criteria be developed that guarantee ethical research?
Context Matters
- Interpretations of ethical standards should consider legal frameworks, disciplinary codes of practice, culture, gender, ethnicity, geography, and formal ethical reviews, such as IRB or REB processes.
Ethical Principles
- The Belmont Report (1979) outlines principles for research:
- Beneficence (do no harm)
- Respect for human dignity
- Justice
Health Care Ethics
- Beauchamp and Childress (2012) list four principles for healthcare ethics:
- Autonomy
- Beneficence
- Nonmaleficence
- Justice
Beneficence
- Benefit participants maximize benefits and minimize harm.
- Participants should not be placed at a disadvantage.
- Research relationships must not be exploited.
Principle of Respect for Human Dignity
- Right to self-determination. Participants choose whether to participate and how.
- Right to full disclosure. Participants must know about the study's details, risks, and benefits.
Principle of Justice
- Right to fair treatment and equitable distribution of research benefits and burdens.
- Right to privacy and confidentiality (anonymity). Ensuring research isn't intrusive and privacy is maintained.
Procedures for Protecting Study Participants
- Risk-benefit assessments
- Informed consent procedures
- Debriefings and referrals
- Treatment of vulnerable groups
- External reviews and the protection of human rights.
Informed Consent
- Informed consent reflects research subjects being volunteers, who are not coerced, and who have sufficient information about the research to make a decision.
- Subjects should have adequate information about the research. Informed consent documents record agreement to participate and can be used in legal cases, for example.
- Subjects should comprehend the information; they should have the freedom to make their informed choice and consent.
Consent Form
- Informed consent documents that participants have enough information about a study
- That they understand the information
- That they have the power to choose to participate
Confidentiality Procedures
- Anonymity: Preventing any link between participants and their data.
- Confidentiality (absence of anonymity): Taking steps in research to prevent breach of confidentiality.
- Certificate of Confidentiality: Used to protect the confidentiality of research, such as from authorities
Debriefings and Referrals
- Debriefing sessions after research participation allow participants to ask questions about the study or share concerns.
- Researchers can also share results with participants or offer referrals to appropriate services, such as health, social, or psychological services.
Treatment of Vulnerable Groups
- Vulnerable subjects (children, cognitively impaired individuals, pregnant women, etc) require specific protections.
- Researchers must prioritize participant safety and well-being, especially when dealing with vulnerable groups.
Groups Considered Vulnerable
- Vulnerable groups include children
- Mentally or emotionally disabled people
- Severely ill or physically disabled people
- Terminally ill people
- Institutionalized people
- Pregnant women
External Review and Protection of Human Rights
- Ethical aspects of any research using human subjects must be reviewed by institutional review boards (IRBs) or similar committees to comply with standards.
- IRBs evaluate research for appropriate inclusion criteria, considerations for participant safety, risk-benefit assessments, and proper informed consent procedures to ensure protection of human rights.
What is IRB Review Board
- Any research involving human subjects must be reviewed by the Institutional Review Board (IRB).
- Ensuring these procedures cover the welfare and rights of participants
- Avoidance of unnecessary risks to research participants
- Importance outweighing the necessity of the research
Example Guidelines for Ethical Reviews in Qatar
- Specific example guidelines for ethical reviews in Qatar can be used when performing a study.
Ethics in Interviews
- Qualitative research affecting interview participants, like ethical consideration for emotional distress or trauma due to interview questions.
Ethics in Observation
- Qualitative research on ethical considerations affecting how participants are recognized in observational studies when participant informed consent may present challenges.
Responsibilities to Yourself and Co-Workers
- Researchers should consider potential risks to themselves and their coworkers.
Nuremberg, Helsinki, and Belmont Reports
- Overviewing ethical principles concerning voluntary participation, informed consent, protection of vulnerable persons, and minimizing risks to participants.
Case Study Examples:
- Case study 1, 2, and 3 demonstrate practical application of ethical considerations in research.
- Case studies present specific details, and prompt discussions on ethical procedures applied to recruitment and other issues in research studies.
Group Activity: Guidelines for Critiquing the Ethical Aspects of a Study
- Instructions for reviewing and critiquing ethical aspects in research that considers guidelines and rubrics
- Guidelines should be used in considering ethical elements in research for any study, and participants' perspectives need attention
Questions
- Question 1 & 2: True or false statements about Nuremberg Code and principle of justice.
- Question 3: Children require special protection in research?
- Question 4: Freedom from harm, privacy and informed consent?
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Description
Test your knowledge on the ethical principles governing research. This quiz covers key concepts such as informed consent, confidentiality, and the role of Institutional Review Boards (IRBs) in protecting research participants. Demonstrate your understanding of these crucial ethical standards.