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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

Death of Jesse Gelsinger (1999) Conflicts of Interest Example

The first subject in a gene transfer clinical trial to die from a reaction to a recombinant viral vector. Jesse suffered from a deficiency of ornithine-transcarbamylase (OTC), a necessary enzyme, and enrolled in a Phase I dose-escalation trial at the University of Pennsylvania. The clinical trial involved the injection of an adenoviral vector containing the gene. Jesse died after receiving the injection.

Subsequent investigations found that the Principal Investigator was an inventor for the technology used in the trial and held equity in the start-up company to which the technology was licensed. This case brought significant attention to the issue of financial conflicts of interest in research. Additional information about financial conflict of interest can be found on the NIH Conflict of Interest (COI) Page (http://grants.nih.gov/grants/policy/coi/index.htm)