Key Ethical Standards for Research and Ethics Process
IT for Change (ITfC) is committed to the principles laid out in the Code of Ethics and Conduct for NGOs laid out in the Compliance Manual of the World Association of Non-Governmental Organizations (WANGO). The IT for Change Ethics Review Committee (ERC) reviews and approves all research involving human subjects to ensure that it is conducted in accordance with institutional, and ethical guidelines. The following are guidelines for researchers:
Respect for core tenets of Human Dignity and Freedom and freedom from harm
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All researchers must adhere to basic principles of human dignity, freedom and respect in conducting their research
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Researchers must refrain from knowingly causing physical or mental harm to person or persons, as well as take into account and be sensitive to possible unintentional harm.
Consent and the Right to not Participate
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The subject should be given the freedom to not participate in the research. The participation must be completely voluntary. (If the subject does not understand the researcher’s language, an interpreter’s help must be taken.
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The subject should be given all the information needed to gain a good understanding of the research in which they are participating.
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Researchers should ensure that the content of their research and the methods are adapted to the age of the participants.
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If the research involves children, it should be made clear to them that their participation is voluntary and they have the choice to withdraw from the research. The consent of the parents/ guardians must be obtained.
Respect for disadvantaged groups
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Special caution should be exercised while collecting data from disadvantaged/ vulnerable groups. Mere consent may not be enough to make sure that their participation is voluntary. The researcher has the responsibility to make sure that the data collected from members of such groups do not lead to unreasonable generalization or discrimination.
Respect individuals’ privacy and confidentiality
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All information that subjects provides about their private lives will be treated as confidential.(The only exception to this is in historical research.)
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Protect individuals’ privacy, which includes their emotional issues, health issues, political opinions, religious opinions and sexual orientation. Exercise caution with any piece of information that is personal in nature.
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Get consent for storage of information
Regard and protection of third parties
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Researchers should get consent to store information from identifiable individuals.
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Personally identifiable information can be stored only for a limited amount of time and deleted once the original purpose has been served. Selected anonymised data will be archived to the Organization’s Research Repository and held indefinitely for future research
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The subject’s name should be de-identified while reporting the data
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If information about individuals other than the subjects are obtained during the research, they should be treated with discretion and not made public. It is possible that information about children may be obtained while collecting data on adults. Such information should be treated with caution.
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The researcher should receive consent from the subject for using the information they got while interacting with the subject in other roles.
Scientific Integrity
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The researcher must be honest in reporting the data.
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Good reference practices must be followed.
Plagiarism
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Plagiarism is the act of stealing work done by others and publishing it as one’s own. If ideas or quotations of other authors or researchers are used, the source should be clearly cited using accepted conventions in publishing.
Commitment to democratic public and social debate
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As far as possible, the research results must be communicated to the wider public to promote democratic discussion. On topics of social relevance, the researchers should try to create a social debate.
These guidelines have been adapted from the guidelines for research ethics in the social sciences, law and the humanities - National Committees for Research Ethics in Norway
Requirement of ethics review clearance
Depending on the level of risk and subject demographic, a review protocol will fall into one of three categories: exempt, expedited, or full board review. The committee members, and if necessary the Chair, will determine the correct level of review.
- Exempt Review – for low risk research activities such as:
- Research conducted in established or commonly accepted educational settings, involving normal educational practices.
- Research using anonymous or benign tests, surveys, interviews, or observations.
- Research involving the collection or study of existing data if it is publicly available or if subjects cannot be identified.
- Research examining public benefit or service programs.
- Oral history and journalistic projects
- Expedited Review (ER) – for research considered to involve minimal risk such as:
- Studies involving the collection of identifiable information in surveys, interviews, or focus groups, and sensitive information that is also identifiable.
- Study involving the analysis of voice recordings.
- Study of blood samples, etc
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Full Board/Committee Review (FB/CR) – for research that is judged to involve more than minimal risk such as:
- Research involving protected populations such as children, prisoners, or disabled individuals.
- Projects that plan to use procedures that are personally intrusive, stressful, or potentially traumatic (stress can be physical, psychological, social, financial, or legal).
- Projects that involve the intentional deception of subjects, such that misleading or untruthful information will be provided to participants
Process of Ethics Review Committee (ERC) Clearance
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A designated member of the ERC will determine that all documents are in order, and that the application is ready for review. When the application is incomplete, it will be sent back to the PI for revision.
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Once the application is deemed complete, the ERC will review the application within a specified time frame.
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Any comments/requests for modifications will be shared with the PI.
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Once the ERC is satisfied that the application is acceptable, it will indicate that the Research Team can proceed with the study (this can take the form of a simple approval letter for record-keeping purposes, with a copy of the approved consent form filed for reference).
Contents of the ERC Application
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Description of the study, including the objectives of the research
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Purpose for which the study is being conducted
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Information and contact details of the Principal investigator as well as other project members
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Qualifications and experience of research team members (more relevant for consultants brought on board temporarily)
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Details about funding
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Methods and timeframe (with research tools annexed)
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List of research locations (sites) and how they will be accessed
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Characteristics of participants
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Number
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Gender
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Age range
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If the study is focused on any specific groups
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Inclusion criteria
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Exclusion criteria
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If there are participants who may be vulnerable (cognitively impaired, sexual minorities, elderly, vulnerable minorities, children, etc.)
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Recruitment procedure
Information about how participants will be identified and recruited and who will recruit them. When applicable, associated documentation (telephone recruitment scripts/participant information sheets, etc. should be attached). If participants will be compensated, the manner of compensation, and how the researcher will decide who is to be awarded compensation.
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Informed Consent
An informed consent form, that may be either signed by the participant or consented to verbally. In the case of verbal consent, researchers may read out the consent form verbatim, and ask respondents to provide a response. The consent form should be translated into the relevant language (the language most comprehensible to the participant) by someone proficient in it. The consent form should should be written in an accessible manner, free of jargon, and free of overly formal language. It should include the following:
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Objective of the research
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Statement indicating approximately how long the tool will take (questionnaire/ interview/ etc.)
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The right to refuse or withdraw: (a) A declaration that the respondent may choose not to participate in the study; and (b) a declaration that the respondent may choose to end their participation in the process (eg. Interview) at any point they so desire
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Statement of benefits and risks
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Statement regarding the anonymity or confidentiality of data and records
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Information regarding how the participant may contact the researcher or lodge a complaint with the ERC
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Data Collection, Data Storage and Anonymity/Confidentiality
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Indicate identifiable data collected
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How the data will be stored, and how confidentiality and security will be maintained, and who will have access to it
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How long the data will be stored
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How the data will be transferred to others
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How the data will be coded, and how the code keys will be stored
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How participant privacy will be maintained (for example, conducting interviews in places where they won’t be overheard, in intimate family contexts interviewing family members separately when possible, not sharing information with others, etc.)
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If audio and video recordings are collected, how they will be stored
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Risks to Participants
A statement of any potential risks to participants, big or small
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Benefits to Participants
A statement of any potential benefits for participants, big or small
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Conflicts of Interest declarations
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Letter of Cooperation
Research projects conducted with partner organizations should have a letter of cooperation signed, that includes information about:
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The research study objective
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The role of the respective organizations
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The kind of data that may be collected (and the kind that may not be)
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The methodologies employed
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The duration of the project
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Assent to follow ethical procedures as determined by the ERC process. These include but are not limited to practices regarding the enrolment of respondents, informed consent procedures, data anonymisation and storage practices.
Continuing Research and Changes to Protocol
The approval, once given by ERC would be held valid for a period of 2 years after which the PI can file an application for renewal. Significant changes to protocol, new risks that arise, adverse events should all be reported promptly to the ERC for consideration.
Please email erc@itforchange.net with any questions that you may have.