1. Concepts of Privacy | |
Definition of Privacy  • Privacy as control of access  • Privacy as a right  • Awareness of privacy | |
Scope of privacy  • Information: demographic, religion, political  • Physical (bodily)  • Proprietary  • Association | |
Importance of Privacy  • Intrinsic  • Instrumental | |
Importance of culture on scope of privacy | |
2. Perspectives on privacy concerns of patients in the research setting | |
Privacy in clinical care compared with research  • Expectations of privacy are greater in the clinical setting compared with the research setting  • Expectations of privacy are greater in the private setting compared with public setting  • Reasons why individuals permit greater access to privacy in the clinical setting compared to research setting  o Benefits are perceived to be greater in clinical care  o Greater trust in clinicians compared with researchers  • Knowledge of the aims of research can enhance potential research participants’ willingness to allow access to their privacy | |
3. Privacy issues during different stages of research | |
Privacy issues before research is conducted  • Recruitment process  • Informed consent setting | |
Privacy issues during research  • Third parties having access to private information  • Gender Issues that occur with data collectors and indivduals who perform physical exams  • Observation research | |
Privacy issues after research  • Use of data and samples in secondary research – informed consent issues  • Data sharing  • Genetic research and return of results | |
4. Clarification of standards regarding privacy in research | |
 • Reconciliation of different views regarding data security in secondary research.  • The need for training regarding privacy laws |