Transcript Lecture 15

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?
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
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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
Access to Data
• One very important question
Who owns the data???
Race and Ethnicity
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Used to characterize individuals
Can be useful
Possibly ill-defined and useless
Ethnicity vs. race?
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.
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”
Future Considerations
• Epidemiology has a pivotal position
• Moral and ethical issues will
continue to evolve
• Epidemiologists and customers must
continue to improve dialogue