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Ethics of human research
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Nazi research
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Japanese research during WW2
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1947 Nuremburg code
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But things were better in the US, right?
NO
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: Tuskegee Study
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1946-1948 Syphilis in Guatemala
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1944-1974: Human Radiation Experiments
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1963: Jewish Hospital Chronic Disease
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: Willowbrook Study
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1968 Tearoom Trade study
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Zimbardo’s Prison Study (1971)
BBC’s The Experiment (2002)
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Belmont report (1979): Ethical Principles and Guidelines for the Protection of Human Subjects of Research Respect for Persons individuals have autonomy and choice people can not be used as a means to an end provide protection to the vulnerable [fetuses, pregnant women, human in vitro fertilization, children, prisoners, or subjects who may have diminished capacity.] provide informed consent and privacy Beneficence minimize risks, maximize benefits obligation to do good obligation to do no harm obligation to prevent harm basis of risk/benefit assessment Justice treat all fairly share equitably burdens and benefits selection not based on convenience
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1999 Jesse Gelsinger Gene Therapy death 2006 “elephant man” trial
BBC, 1999 Jesse Gelsinger Gene Therapy death 2006 “elephant man” trial 2016 painkiller trial Stephanie Mahe, Reuters
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APA guidelines
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1) Get IRB approval Institutional Review Board
Office of Human Research Protections Review most research done at an institution or by those affiliated with that institution (required for all organizations that receive any federal funds) Made up of members with expertise from across the university, plus at least one outside person and at least one nonscientific person
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2) Get informed consent For research For use of recordings, images
Dual relationships Parent consent, child assent Freedom to withdraw Confidentiality
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3) inducements Large payments
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4) Deception Only use when necessary 5) Debrief
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Discuss cases How okay are these examples?
How could they be made better or more ethical?
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