Introduction to Ethics in Qualitative Research Methods of Qualitative Analysis II Outline prepared and written by: Dr. Jason J. Campbell: jasonjcampbell.org Youtube Playlist Link: youtube/playlist?list=PL2B170AF27425C888&feature=viewall --------------------------------------------------------------------------------------------------------------------- Melanie Mauthner, Maxine Birch, Julie Jessop and Tina Miller, ed. 2002. Ethics in Qualitative Research Los Angeles: Sage. Buy on Amazon. --------------------------------------------------------------------------------------------------------------------- §1.0: Brief History and Ethics of Human Subjects Research: Timeline can be accessed from the original here. 1932-1972 The Tuskegee Syphilis Study, sponsored by the U.S. Department of Health. Studied the effects of untreated syphilis in 400 African American men. Researchers withheld treatment even when penicillin became widely available. Researchers did not tell the subjects that they were in an experiment. Most subjects who attended the Tuskegee clinic thought they were getting treatment for bad blood. [Additional Comment]: From 1932 to 1972 -- 400 black men with syphilis were purposely left untreated by the U.S. government to test the diseases long-term effects, including dementia, blindness and disfigurement.1 1939-45 German scientists conduct research on concentration camp prisoners. 1947 The Nuremberg Code for research on human subjects is adopted. The Allies use the document in the Nuremberg Trials to convict Nazi scientists of war crimes. The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that 1 Stephen, Magagnini, and smagagnini@sacbee. 2011. Medical review panel protects human subjects - COMMITTEE FORMED AFTER TUSKEGEE STUDY EXPOSED. Sacramento Bee, The (CA), A3. 1 before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonable to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.2 Essential Elements for Ethical Consideration: Participant: 1. Knowledge of generalizability 2. Autonomy 3. Anonymity 4. Consent 5. Ability to terminate participation at any time. Researcher: 1. Possess sufficient training to conduct the experiment/survey 2. Cognizant of perceived power relations/imbalances b/ self and participant.3 3. Inform participant of any dangers and receive consent. 1953 James Watson and Francis Crick discover the structure of DNA, for which they eventually would share the Nobel Prize in 1962. They secretly obtained key x-ray diffraction data from Rosalind Franklin without her permission. She was not awarded a Nobel Prize because she died in 1953 from ovarian cancer (at age 37), and the prize is not awarded posthumously. 1964 [ref] Declaration of Helsinki. In 1964, the World Medical Association established recommendations guiding medical doctors in biomedical research involving human subjects. The Declaration governs international research ethics and defines rules for research combined with clinical care and non-therapeutic research. The Declaration of Helsinki was revised in 1975, 1983, 1989 and 1996 and is the basis for Good Clinical Practices used today. Issues addressed in the Declaration of Helsinki include: Research with humans should be based on the results from laboratory and animal experimentation Research protocols should be reviewed by an independent committee prior to initiation Informed consent from research participants is necessary Research should be conducted by medically/scientifically qualified individuals Risks should not exceed benefits 2 ohsr.od.nih.gov/guidelines/nuremberg.html 3 cnr.berkeley.edu/ucce50/ag-labor/7article/article35.htm 2 1974:
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