Privacy and Confidentiality

1. Privacy and Confidentiality West Virginia University Office of Research Integrity & Compliance Human Research Protections Program

2. People want to control… • The time and place where they give information. • The nature of the information they give. • The nature of the experiences that are given to them. • Who receives and can use the information.

3. Example of a Personal Privacy Issue in Research • A hidden video camera denies subjects the control of access to themselves. • They should be warned!

4. Privacy • Privacy refers to persons and to their interest in controlling access of others to themselves. • (Confidentiality refers to data.)

5. Researchers should respect people’s privacy • But – What is Private?

6. The IRB’s Dilemma • The Federal Regulations do not Define Privacy. The Guidebook from the Office for Human Research Protections (OHRP) says: • “Decide whether there is an invasion of privacy. There are no criteria. Base your decision on your own sense of propriety. “

7. Judging privacy by one’s own sense of propriety sets an ethnocentric, capricious, and inconsistent standard for judging privacy.

8. Besides, what’s private to you here, today, differs from… • Last year • Tomorrow • When you are elsewhere • When you were a child

9. Ability to regulate access of others to oneself (privacy) varies with: • Status • Role • Verbal skill • Stage of development • Context • Culture • Technology used in the research

10. What is private also varies with: • Gender • Ethnicity • Age • Socio-economic class • Education • Ability level • Social/verbal skill • Health status • Legal status • Nationality • Intelligence • Personality • Relationship to researcher

11. A young child would want a parent present at a session with a researcher A teenager has different issues of personal privacy, and would want the parent absent.

12. Another perspective on privacy: Is the information sought any of the researcher’s business?The subject’s answer depends on: • Factors in the subject’s background, beliefs and context. • Who is sponsoring the research. • The purpose of the research. • The questions being asked – are they sensitive, relevant to the ostensible purpose of the research. • Whether the subject likes the researcher (interviewer) .

13. Some factors determining liking of the researcher: • Method of recruitment • Researcher’s body language and rapport • Convenience of the research time and place • Ethnicity, gender, apparent social class of the researcher in relation to the subject • Eye contact, speech patterns, posture • Cultural sensitivity