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Table of Contents

  1. Key questions
  2. Example of harm from social science research -
  3. Research merit and integrity
  4. Justice
  5. Special protections for vulnerable communities
  6. Ethics Controversies: Case Studies - Debates about the ethics of the Tearoom Trade Study Methodology
  7. Case 2: The Human Terrain System
  8. Informed consent
  9. Freedom from coercion
  10. Case 3: Gang Leader for a day
  11. When social scientists uncover crime through their research
    1. Confidentiality for research participants when crime occurs
  12. Other ethical problems in Venkatesh's research
  13. Responsibilities to people/cultures being studied
    1. Informed Consent
    2. Informed consent scenario
    3. Best practice:
    4. Protecting identities of participants
    5. Case Study
    6. Protecting identities of participants: scenario
  14. Do no harm: think about the ramifications of the research
  15. Reciprocity: paying people for their contributions
    1. Reciprocity and collaboration with the community you work with
  16. Intimacy in research: maintaining informed consent over time
    1. Case Study:
    2. Intimacy in ethnographic research: sex and the field
  17. Respect for persons:
  18. Protection from psychological or physical harm
  19. Intellectual property
  20. Summary of Principles of Ethical Research
  21. Council for International Organization of Medical Sciences (CIOMS)
  22. Death of Jesse Gelsinger (1999) Conflicts of Interest Example
  23. Respect for Persons
  24. Informed Consent
    1. Voluntariness
    2. Comprehension
    3. Disclosure
  25. Case Study: Study on Campus
  26. Informed Consent
    1. Consent Document 1
    2. Consent Document 2
  27. Requirements for documentation of informed consent
  28. Decisional Capacity
  29. Children's Participation in Research
    1. Lack of assent from a child
  30. Research with prisoners
  31. Community Consultation
  32. Beneficence
  33. Justice
  34. Compensation for Research Participation
    1. Avoiding undue inducement
    2. Case Study involving confidentiality of clinical data
  35. Confidentiality

Informed Consent

Informed consent should be understood as an on-going process rather than a level of legal protection for an institution. It is not intended to be a one-time act of having a participant sign a form.

Informed consent is designed to inform research participants about the purpose, risks, potential benefits and alternatives to the research that allows people to make a decision about whether or not to participate based on their own goals and values. This exchange of information should occur at enrolment and throughout the study.

Researchers are responsible for providing information during the informed consent process in a manner that is understandable to the potential participants. Researchers should be confident that the individual understands all information disclosed.

Researchers can use methods in addition to a consent form to enhance individuals' comprehension. Some examples include:

  • Oral presentations that provide potential participants with the opportunity to discuss the information and ask questions.
  • Providing additional educational materials, such as brochures, about the research.
  • Video presentations.

The informed consent process must be delivered in language that is understandable to the participant. This may mean re-writing the documents into more simple language or translating documents and presentations into the language with which participants are most comfortable.