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Ethical Issues

Ethical Issues. Obligations to Study Subjects. Informed consent involves several issues including: full disclosure privacy and confidentiality limitation of the individuals rights informing the subject of study findings. Privacy and Confidentiality. Why are medical records needed?

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Ethical Issues

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  1. Ethical Issues

  2. Obligations to Study Subjects • Informed consent involves several issues including: • full disclosure • privacy and confidentiality • limitation of the individuals rights • informing the subject of study findings

  3. Privacy and Confidentiality • Why are medical records needed? • Generate data and validate info. • Identify indiv. for eventual follow-up • How did it come about? • Two major legislative proposals

  4. Protection of Privacy and Confidentiality • Informed consent required • All data secured • Only study numbers used • Individual identifying data destroyed • Results published in aggregate • Individual identifying data not stored on computers • Education of staff

  5. Access to Data • One very important question Who owns the data???

  6. Race and Ethnicity • Used to characterize individuals • Can be useful • Possibly ill-defined and useless • Ethnicity vs. race?

  7. Race and Ethnicity • Can inclusion in study be beneficial? • Can inclusion be a “negative”? • Is race ever used as a surrogate? • Give an example, either real or hypothetical. Your Assignment: 1. Define race & ethnicity. 2. Distinguish between the two terms. 3. Consider & discuss these questions.

  8. Conflict of Interest • Actual and perceived biases • Most work in academia, government or industry • Study subject to overt, subtle pressure • “Silver Blaze” bias (from Sherlock Holmes short story by Sir Arthur Conan Doyle) • Should be openly acknowledged

  9. Interpreting Findings • When should studies be reported? • Should newspapers be allowed to publish reports of studies? • Do they effect the public’s perception?

  10. Epidemiologist’s Responsibility • Communicate health risks as accurately as possible • Useful to policymakers • Should an epidemiologist be an advocate? • On occasion, “Yes”

  11. Future Considerations • Epidemiology has a pivotal position • Moral and ethical issues will continue to evolve • Epidemiologists and customers must continue to improve dialogue

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