Description / Summary |
The document presents a series of five proposals regarding the structure, scope, and evaluation procedures of ethical review:
- Creation of an ethical review system for the humanities and social-behavioral sciences
- Establishment of ethical review committees
- Delineation of types of studies that require ethical review
- Ethical opinion
- Needed legislative changes, education in research ethics, and evaluation of the newly proposed system
The guideline then delineates a series of ethical principles and procedures:
- 1. Autonomy of research subjects
- 1.1: Voluntary participation
- 1.2: Autonomy and research involving minors
- 1.3: Autonomy and age limits
- 1.4: Information for subjects
- 1.5: Exceptions from informed consent
- 2. Avoiding harm
- 2.1: Avoiding mental harm
- 2.2: Avoiding financial and social harm
- 2.3: Studies containing risks of harm
- 3. Privacy and data protection
- 3.1: Protecting research data and confidentiality
- 3.2: Storing or destroying research data
- 3.3: Protecting privacy in research publications
- 4. Ethical review
- 4.1: Guidelines for reviewing studies
- 4.2: Special review guidelines for different research designs
|
The guideline spells out four main principles:
- Freedom of persons
- Safety
- Justice, human dignity
- Ethical review by independent bodies
The document then addresses questions raised by protocols submitted to the Committee:
- Consent
- Safety
- Problems of equity
- Review of protocols
|
This document consists of sections on the following topics:
- Research, society, and ethics
- Norms and values of research
- Freedom of research
- Responsibility of research
- Responsibility of institutions
- Respect for individuals
- Human dignity
- Privacy
- Duty to inform
- Consent and obligation to notify
- Confidentiality
- Limited re-use
- Storage of personal data
- Responsibility for avoiding harm
- Respect for third parties
- Protection of children
- Respect for privacy and family life
- Respect for the value and motives of others
- Respect
- Defining roles and responsibilities
- Respect for groups and institutions
- Respect for private interests
- Respect for public administration
- Respect for vulnerable groups
- Preservation of cultural monuments and remains
- Research on other cultures
- Limits on cultural recognition
- Research community
- Co-authorship
- Good citation practice
- Plagiarism
- Scientific integrity
- Data sharing
- Impartiality
- Relations with colleagues
- Student-supervisor relationship
- Responsibilities of supervisors and project managers
- Commissioned research
- Different types of research
- Commissioned research
- Responsibility of researchers in large projects
- Independence and conflict of interests
- Transparency in research funding
- Presentation and use of results
- Right and duty to publish
- Dissemination of research
- Dissemination as an academic responsibility
- Requirements for individuals and institutions
- Interdisciplinary discourse and public deliberation
- Participation in public debate
- Accountability in dissemination
- Reporting results to participants
|
This document features discussions on these topics:
- Definitions
- Private or public data
- Free and informed consent
- Children's right to protection
- Personal data, confidentiality, and anonymity
- Regard for third parties
- Use of quotes from the internet
- Reporting of results
|
The section on Observational Studies Conducted Through Participating, Observing, and Recording (pages 42-45) makes these key points:
- Approval must sought from an ethics review board if the research uses personally sensitive data
- If the research falls within the scope of the Act Concerns the Ethical Review of Research Involving Humans, the project must be reviewed by a regional ethics review board
- Ideally, research participants should provide written consent to research participation
- Covert participant observation should be the exception to the rule
- For studies involving participant observation, the identity of the subjects must not be revealed
- If a subject is under 15 years of age, permission from both guardians and the child must be sought
Video-Recording
- Video-recording should only be used when other data collection methods are not feasible.
- Consent should explain:
- Whether faces or voices will be disguised
- Whether copies of the video will be made
- Whether the video will also be used for non-research purposes
- Whether other analyses will be performed
- Whether the informants will be able to watch the video
- Whether any associations between the video and other personal data will be coded
- Whether the video will be destroyed if the subject withdraws
- Video storage and destruction at the conclusion of the study
- In some research fields, consent should be given following a two-step process:
- Approval of the initial videotaping
- After having the opportunity to view the video, approval to analyze the video
- The researcher must assure secure storage and restricted access to the video
|
This Framework details minimum requirements for research proposals and addresses several frequently asked questions:
- ESRC's minimum requirements
- 1.1 Ethics issues should be identified in the proposal
- 1.2 All ESRC-funded research should be subject to ethics review
- 1.3 Criteria for ethical consideration of research proposals
- 1.4 RECs should be constituted and operate in accordance with the framework standards
- 1.5 Research Organizations should establish procedures for monitoring research
- 1.6 Complaints, appeals, and conflict of interest procedures should be in place
- 1.7 Arrangements should be made for training researchers, research students, supervisors, and members of RECs
- 1.8 Student research and ethics review
- 1.9 Arrangements should be made for collaborative research
- 1.10 Duplication of submission should be avoided
- 1.11 Legal and data protection requirements should be met
- Frequently asked questions
- 2.1 Assessing risk
- 2.2 Consent
- 2.3 Medical research
- 2.4 Internet-mediated research
- 2.5 Research governance
|
This document defines internet-mediated research and discusses:
- Ethical principles applied within ethical review in the UK
- Autonomy
- Beneficience
- Non-maleficence
- Confidentiality
- Integrity
- Specific items to consider
- Offline, online, or neither
- Communities, individuals, and data
- Communities
- Deception
- Valid consent
- Age
- Research involving security-sensitive material
- Social media
- Web-generated data
- Data mining
- Lurking or observation
- Collecting textual led data
- Interacting with groups, communities, or individuals
- Surveillance
- Researching key influencers
- Private or public spaces and data
- Discrepancy in expressed concerns for privacy vs. internet users' behavior
- Consent
- Balancing interests of the research, participants, data, and the online platform
- Right to be forgotten
- Data management
- Data protection considerations
- Data security and sharing
- Copyright law and other relevant legislation
- Presenting findings
- Anonymity
- Legal and/or moral duty to disclose or break confidentiality
|
---|