Table 2.

Themes and Subthemes

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