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Informed Consent and Using Archived Interview Data

Informed Consent and Using Archived Interview Data. Contemporary Issues and Debates. Ethical Issues. Social Scientists have an obligation to the public, their colleagues, the study population and the scientific community to ensure that the data is neither coerced, compromised or exploited.

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Informed Consent and Using Archived Interview Data

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  1. Informed Consent and Using Archived Interview Data ContemporaryIssues and Debates

  2. Ethical Issues • Social Scientists have an obligation to the public, their colleagues, the study population and the scientific community to ensure that the data is neither coerced, compromised or exploited

  3. Social and Scientific Responsibility • Ensure that the participants rights, privacy and well-being of the study population and their communities are respected and not subjected to unethical and egregious abuses of trust or conduct.

  4. Data Collection and Analysis • Extent and scope of research has expanded • Heightened awareness over ethics and concerns of both researchers and research methodologies

  5. Research Ethics Issues • Harm • Consent • Privacy • Confidentiality of Data

  6. Sociologist E. Babbie (1983) “All of us considers ourselves ethical; not perfect perhaps, but more ethical than most of humanity”.

  7. The Research Process • Is a trade off between the level of access by researchers and • The degree of “ethical risk” that the researchers are willing to take

  8. The National Council on Ethicsin Human Research (NCEHR) • Non-governmental organization • Sponsored by the Canadian Institutes of Health Research, Health Canada, the Interagency Advisory Council on Research Ethics, and the Royal College of Physicians and Surgeons in Canada

  9. The Notion of Informed Consent • Originally designed with the intention of protecting patients from abuses by practitioners of medical research • The language of the regulations reflects it medical genesis

  10. Definition of Informed Consent • “The knowing consent of an individual or his legally authorized representative so situated so as to be able to exercise free power of choice without undue inducement or any element of force, fraud, deceit, duress, or other forms of constraint or coercion”

  11. Basic Elements of Informed Consent • Fair explanation of the purpose of the research and the procedures to be followed • Description of the risks and benefits • Offer to answer any inquiries • Free to withdraw consent and discontinue in the project at any time

  12. Institutional Review Boards (IRBS) • Governing body that monitors and approves research in Canada • Founded in 1993 in response to a perceived need for a mechanism to expedite Ethics Reviews of proposed clinical research in Canada and other countries

  13. The Components of Informed Consent • Knowledgeable • Voluntary • Competent

  14. Kantian Categorical Imperative • The belief that all individuals have a right to be treated as persons rather than objects and to have their autonomy and dignity respected

  15. The Three Dimensions of Informed Consent • Knowledgeability • Voluntary Choice • Competent Choice

  16. When is Consent Informed? • Uniformed consent is tantamount to no consent at all • Researchers obligated to to disclose whatever information participants would need to make an intelligent decision about the potential risks involved in the research process

  17. Erikson and Kelman • It is unethical for a sociologist to deliberately misrepresent his identity for the purpose of entering a private domain to which he is not otherwise eligible; and it is unethical for a sociologist to deliberately misrepresent the character of the research in which he is engaged

  18. Should Consent be Renewed • Experiments and interviews are bounded events of short duration, unlike field work which is a long term venture that can extend several years as in a longitudinal study

  19. Consent and Interviews • Interviewers and research participants, especially if they emerge and change over time might be subject to changes in circumstance, setting, organization and even groups being studied • Reassess their research activities and furnish the research participants with fresh communication and reflection along the way

  20. Kantian Categorical Imperative • People should not be treated as objects also means that they should know that they are being are being studied • Should be able to withhold information if they don`t want that information to be documented and included as part of the scientific community • Information should not be recorded and made available to the scientific community

  21. Social, Legal, Political Implications • Failing to do so is a violation of ethical privilege and might also serve to put potential research particant at risk

  22. Is everyone equally deserving of informed consent • Informed consent is a considered a universally applicable right and these federal regulations apply to all potential subjects • Instituted because some groups of subjects lacked power relative to to researchers and therefore had less capacity to freely choose to participate

  23. Vulnerable Groups • Subordinated Populations • Deviants • Ethnic minorities • Aboriginal peoples • Prisoners • Students • Landed immigrants

  24. Universal Principle of Informed Consent • Makes no distinction between the powerful and the powerless • Serves to offer some protection to the powerless by affording them a right to be left alone

  25. Accountable Public Figures • Government Officials • Police Officers • Physicians • College teachers

  26. Archival Data and Interviews • Using public and private archival data as a secondary source • Virtually any running record produces a new kind of archive • Data might not be restricted to certain groups • Law enforcement, credit history data, school records

  27. Sociologist Denzin • Archives can be divided up into two types of classification • Public archival records • Private archival records • Unproblematic for the Qualitative researcher community • Assumption that Qualitative data can be treated like Quantitative data

  28. Actuary Records • Tend to be produced for special or limited audiences • Made available to the public under special circumstances • Birth and death records • Records of marriage and divorces • Application information for Insurance • Land, title, deed information

  29. The Limitations of Informed Consent • The abstract, universal and individualistic assumptions of informed consent limit its ability to resolve many ethical dilemmas and does not go far enough nor take fully into account the ethicl dimensions that individuals seek

  30. The Limitations of Informed Consent • Central to this problem is that informed consent applies to individuals, each of who is to be treated the same • Tends to ignore the inherent complexities of the social structure and the deep-seated differences of power in the social body

  31. THE END

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