Ethical Considerations in Qualitative Research PDF

Ethical considerations in Qualitative Research www.udst.edu.qa REQUIRED Green, J., & Thorogood, N. (2018). Qualitative Methods READING: for Health Research. Sage: chapter 4 (pp. 83 - 106; 112); Chapter 1 (pp...

Ethical considerations in Qualitative Research www.udst.edu.qa REQUIRED Green, J., & Thorogood, N. (2018). Qualitative Methods READING: for Health Research. Sage: chapter 4 (pp. 83 - 106; 112); Chapter 1 (pp. 3 - 28)  1. Examine the principles guiding ethical conduct of qualitative research in Qatar including special considerations related to Student vulnerable populations Learning 2. Examine the policies specific to ethical conduct of qualitative Outcomes research in Qatar 3. Explore ethical dilemmas and conflicts  Definition of Ethics Morality: Principles concerning the Ethics: distinction Disciplined between study of right and morality wrong or good and bad behavior. Ethical dilemmas and conflicts the ‘right’ thing to do Three potential tensions: Managing risks (risk related to the research, risk of bias…etc) Respecting different participants’ voices (principle of equity) Doing research in less well-resourced settings (conflict of interest, non funded research…etc) Ethical Dilemmas in Conducting Research Ethical dilemma in research: a situation in which the rights of study participants are in direct conflict with requirements of a study Examples of dilemmas Does a treatment tested prolongs life of a terminal dementia patient? Is it ethical to test low carb diet in cancer patients to improve the response to chemotherapy? Two major ethical issues in qualitative research include confidentiality, and the role of the researcher as a data collection instrument.  Historical Background 1932 1940s 1969 Tuskegee Syphilis Study: U.S. radiation experiments administered U.S. Public Health Service investigational drugs to purposefully withheld mentally disabled children treatment on men infected with syphilis to see the natural progression of disease. Some pregnant women in specific countries with HIV given a placebo rather than Nazi medical experiments treatment know to prevent Subjects exposed to harm and injected aged senile patients mothers from passing virus forced to participate with cancer cells to fetus 1930s and 1940s 1965 1994 02/02/2025 7  Codes of Ethics Nuremberg Code: CNA: Ethical Research response to Nazi Belmont Report Guidelines for RNs atrocities 1949 1978 2002 1964 1995 2015 Declaration of Helsinki: ANA Ethical Guidelines ANA declares Year of World Medical Assn. in the Conduct, Ethics: Revised Code of Dissemination, and Ethics for Nurses with Implementation of Interpretive Nursing Research Statements 02/02/2025 8 What are Ethical Guidelines? Good research governance entails regard to professional standards, legal or statutory requirements, and ethical principles. Ethical principles concern the researcher’s responsibilities Research often generates tensions between these responsibilities which are not easily solved by reference to codes of practice Designing qualitative studies in health sciences & conflicting responsibilities to different stakeholders Different theoretical approaches imply some rather different ideas about the proper responsibilities of researchers. Values in research Science is rooted in social values Does the researcher have an obligation to ‘do good science’? the primary responsibility of a researcher: to ‘knowledge’ in an abstract sense, and perhaps to future generations of researchers. the secondary responsibility: the implications this has for research practice.   Science is often viewed as purely objective and value-free, and ethical principles are seen as universal rules. However, both are influenced by societal, cultural, and personal values. o Weaker liberal view Ethical values cannot be absolute, and that therefore ethical practice is relative and dependent on the moral professionalism of the researcher. Differing Ethical standards vary across cultures, Approach o Liberal view Decisions about what to research, how to do it and how to publish must es to be made at the discretion of the researcher, whose conscience should be the primary guide. Researchers should have the autonomy to decide what topics to study, Ethical how to approach them, and how to disseminate their findings. Values o Critical view Research should be carried out with the explicit aim of contributing to social justice, or emancipation. Assumes those at the top of a social hierarchy are less biased than those at the bottom. Therefore, the job of the social scientist is to query the established order. Research becomes a tool for social change rather than merely generating neutral knowledge. Ethical Review ‘Ethical practice’ is different in: Different places Different times Across different disciplines Question: is it possible to develop a set of criteria that will ensure that a study is ‘ethical’ if the criteria are met? Context Matters! Interpretations should not be one size fits all and ethical analyses should be considered other appropriate factors such as: Legal and statutory frameworks Disciplinary codes of practice Culture, gender, ethnic, and geographical considerations. Formal ethical reviews (e.g., IRBs or REBs) Ethical Principles: The Belmont Report (1979) Beneficence Respect for human Justice Imposes a duty on dignity Includes the right to self- Includes participants’ right researchers to minimize determination and the right to fair treatment and their harm and maximize benefits to full disclosure right to privacy Health Care Ethics ‘four principles’ of Beauchamp & Childress (2012) Autonomy – respecting the rights of the individual Beneficence – doing good Non-maleficence – not doing harm Justice – particularly distributive justice or equity. Beneficence Principle of beneficence: Above all, do no harm. Right to freedom Beneficence—minimize harm; maximize from harm and benefits discomfort Participants should not be placed at a Right to disadvantage. protection from This special relationship should not be exploitation exploited. Principle of Respect for Human Dignity Right to self-determination (absence of coercion) Deciding voluntarily whether to participate in a study, without risking prejudicial treatment Having the right to ask questions, refuse answering questions, and drop out of the study Right to full disclosure (absence of deception or concealment) Receiving a description of the study, the person’s right to refuse participation, and potential risks and benefits Principle of Justice Right to fair treatment Concerns the equitable distribution of benefits and burdens of research Right to privacy (confidentiality, anonymity) Ensures that the research is not more intrusive than it needs to be and that privacy is maintained  Risk–benefit assessments Procedur Informed consent es for Confidentiality procedures Protectin Debriefings and referrals g Study Treatment of vulnerable groups External reviews and the protection Participa of human rights nts Major Potential Benefits to Participants Access to a potentially beneficial intervention that might otherwise be unavailable Comfort in being able to discuss their situation or problem with a friendly, objective person Increased knowledge about themselves or their conditions Escape from normal routine Satisfaction that information they provide may help others with similar problems Direct gains through stipends or other incentives Major Potential Risks to Participants Physical harm, including unanticipated side effects Physical discomfort, fatigue, or boredom Emotional distress from self-disclosure, discomfort with strangers, embarrassment relating to questions being asked Social risks, such as the risk of stigma, negative effects on personal relationships Loss of privacy Loss of time Monetary costs (e.g., for transportation, child care, time lost from work) Minimal risk is a risk expected to be no greater than those ordinarily encountered in daily life or during routine procedures. Potential Benefits and Risks to Study Participants  Risk–benefit assessments Procedur Informed consent es for Confidentiality procedures Protectin Debriefings and referrals g Study Treatment of vulnerable groups External reviews and the protection Participa of human rights nts  Declaration of Helsinki (WMA 2000) states that ‘subjects must be volunteers and informed participants. Individuals should not be coerced, or persuaded, or induced, into research ‘against their will’. Informed Participants have adequate information about consent the research. Participants can comprehend that information. Participants have free choice in deciding whether to participate in or withdraw from the study. Researchers usually document informed consent by having participants sign a consent form. Consent Form Informed consent means that participants have adequate information about the study, comprehend the information, and have the power of free choice, enabling them to consent to or decline participation voluntarily. Implied consent (e.g., for self- administered questionnaires) Process consent (renegotiated over time, qualitative studies)  Risk–benefit assessments Procedur Informed consent es for Confidentiality procedures Protectin Debriefings and referrals g Study Treatment of vulnerable groups External reviews and the protection Participa of human rights nts Confidentiality Procedures Anonymity—researchers cannot link participants to their data. Confidentiality in the absence of anonymity—other confidentiality procedures need to be implemented. Taking steps to ensure breach of confidentiality does not occur Certificate of Confidentiality (NIH)—a certificate obtained to prevent forced disclosure of confidential information to authorities The Helsinki Declaration (1964) notes that ‘Every precaution should be taken to respect the privacy of the subject [and] the confidentiality of the patient’s information’.  Risk–benefit assessments Procedur Informed consent es for Confidentiality procedures Protectin Debriefings and referrals g Study Treatment of vulnerable groups External reviews and the protection Participa of human rights nts Debriefings and Referrals It is sometimes advisable to offer debriefing sessions following data collection so that participants can ask questions or share concerns. Researchers can also demonstrate their interest in participants by offering to share study findings with them after the data have been analyzed. Finally, researchers may need to assist participants by making referrals to appropriate health, social, or psychological services.  Risk–benefit assessments Procedur Informed consent es for Confidentiality procedures Protectin Debriefings and referrals g Study Treatment of vulnerable groups External reviews and the protection Participa of human rights nts Treatment of Vulnerable Groups Vulnerable subjects are study participants who require special protections. May be incapable of giving fully informed consent (e.g., cognitively impaired people) or may be at high risk for unintended side effects (e.g., pregnant women) Some (e.g., children) cannot make a truly informed decision about voluntary participation. Groups Considered Vulnerable Children Mentally or emotionally disabled people Severely ill or physically disabled people Terminally ill people Institutionalized people Pregnant women National Health Strategy, MOPH,  Risk–benefit assessments Procedur Informed consent es for Confidentiality procedures Protectin Debriefings and referrals g Study Treatment of vulnerable groups External reviews and the Participa protection of human rights nts External Review and Protection of Human Rights Ethical aspects of a study are increasingly likely to be reviewed before permission is granted to conduct a study. Human subjects committees Institutional Review Boards (IRBs) Review research projects assess many aspects included: Evaluating inclusion and exclusion criteria Investigator–participant relationship Assessing risk and benefit Assessing consent forms and process What is IRB (institutional Review Board) What needs IRB Approval? Any research that involves human subjects conducted in HMC shall be under the jurisdiction of the IRB. The IRB is responsible for determining and assuring the following: The welfare and rights of human subjects are adequately protected and informed consent obtained, if necessary. Human subjects are not placed at unreasonable physical, mental, or emotional risk as a result of research. The necessity and importance of the research outweighs the risks to the subjects; and the researcher(s) is/are qualified to conduct research involving human subjects. https://www.hamad.qa/EN/Education-and-research/Medical_ Research/IRB/Pages/What-needs-IRB-Approval.aspx Example Guidelines for Ethical Reviews in Qatar Guidance for the Design, Ethical Review, and Conduct of Genomic Research in Qatar: https://research.moph.gov.qa/DepartmentalDocuments/Guidance%20for%20the% 20Design,%20Ethical%20Review,%20and%20Conduct%20of%20Genomic%20R esearch%20in%20Qatar.pdf?csrt=16566705229134832818 Review the document  Impacts on the lives of Ethics in participants: emotional consequences (traumatic Interviews incidents) Interview questions respect participants: Ethics in informed consent is often Observati problematic. on Responsibilities to yourself and co-workers Researchers should consider the following sets of potential risk: Physical threats or abuse Psychological trauma The potential for compromising situations (improper behaviour) Increased exposure to risks such as infectious disease or accidental injury. Question #1 Tell whether the following statement is True or False. The Nuremberg Code was one of the first established sets of ethical standards. True False Question #2 The principle of justice ensures a research subject’s right to: Self-determination Full disclosure Protection from harm Privacy Question #3 Tell whether the following statement is True or False. Children require special protection when they are involved in a research study. True False Question #4 Tell whether the following statement is True or False. Freedom from harm and the right to privacy are the two principles on which informed consent is based. True False Case Study 1 The participants in this study were chosen from nurses who been working in a long term care facility for the last 12 months in that location. The participants have been contacted by their manager to participate in a focus group and an interview. Discuss how ethical are incorporated (or not) into this participants recruitment. Do you have any concern regarding the procedures for Protecting the Study Participants Case Study 2 The research question was what influences does a clinical leadership workshop, focused on teamwork and communication, have on the attitudes, knowledge, and skills of medical radiologist. Participants would discuss their existing conflict with their management. One of the leaders was among the participants. Discuss how ethics has been incorporated (or not) into this data collection. Do you have any concern regarding the procedures for Protecting the Case Study 3 You are invited to participate in a study concerning your feelings about research. You will be asked to complete a brief questionnaire. There are no known risks of participating in this study, and there are no guaranteed benefits. Completion of the questionnaire will take about 5 minutes. Your privacy will be maintained in all reports on the findings from this study. If you agree to participate, you are asked to sign and date this form in the designated area below. If you have questions about your participation, feel free to ask your instructor. If you have any concerns or complaints, you are welcome to contact your instructor now or at any time in the future via e-mail. Discuss how ethical are incorporated (or not) into this consent form Do you have any concern regarding the procedures for Protecting the Study 02/02/2025 Participants 45 Group Activity: Guidelines for Critiquing the Ethical Aspects of a Study In small groups, review the provided article. Use the ethical assignment rubric. Answer the following questions for critiquing the ethical aspects of a study. Be prepared to share your answers with the class. Group Activity: Guidelines for Critiquing the Ethical Aspects of a Study 1. In small groups, review the provided article. 2. Answer the following questions for critiquing the ethical aspects of a study. 3. Be prepared to share your answers with the class. 02/02/2025 48