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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?
Generate data and validate info.
Identify indiv. for eventual follow-up
• How did it come about?
Two major legislative proposals
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
Race and Ethnicity
• Used to characterize individuals
• Can be useful
• Possibly ill-defined and useless
• Ethnicity vs. race?
• 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.
Race and Ethnicity
Your Assignment:1. Define race & ethnicity.
2. Distinguish between the two terms.
3. Consider & discuss these questions.
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
Interpreting Findings
• When should studies be reported?
• Should newspapers be allowed to
publish reports of studies?
Do they effect the public’s perception?
Epidemiologist’s
Responsibility
• Communicate health risks as
accurately as possible
Useful to policymakers
• Should an epidemiologist be an
advocate?
On occasion, “Yes”