Privacy and Confidentiality in Epidemiology: Special Challenges of Using Information Obtained without Informed Consent
Privacy and Confidentiality in Epidemiology: Special Challenges of Using Information Obtained without Informed Consent
This chapter addresses the following questions: What values underlie privacy and confidentiality and what consequences follow from their breach? What values justify intrusion upon privacy and confidentiality without consent? Under what circumstances and by whom? How are these decisions to be made? What personal information can be disclosed? When? To whom? The values of individual privacy, confidentiality, and public goods cannot always be reconciled, so trade-offs are often required. The laws and regulations that address these issues are considered, identifying some of the ways in which they conflict with or fail to address these ethical issues.
Keywords: privacy, confidentiality, ethics, information access, public goods
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