Privacy & Confidentiality By Ann Richards, Ph.D. West Virginia University adapted from a presentation by By Joan Sieber California State University, Hayward

The Privacy & Confidentiality Test  Privacy test: Does the subject think the information sought is any of the researcher’s business? Is the subject comfortable in the research setting?  Confidentiality test: Is the subject satisfied with the methods that will be used to control who can have access to the data?

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.

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

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. “

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

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

WAYS TO RESPECT PRIVACY IN RESEARCH  Informed consent – if effectively done!  Knowledge of subject’s culture.  Rapport and sensitivity to individuals.  Research associates from that culture.  Extensive consultation with appropriate professionals & peers of subjects.  Analyze the research context & technology.

What is Confidentiality?  Confidentiality is about data (not people), and about agreements and procedures for limiting the access of others to data.  There are ever-increasing methods of assuring confidentiality, along with ever increasing high-tech methods of breaching confidentiality.

It is hard to find the many techniques for protecting confidentiality:  Inter-file linkage  Error inoculation  Statistical strategies  Top coding  Restricted public use data  Restricted access, enclaves, archives  Certificates of Confidentiality  Ethical editing of qualitative descriptions  Data brokering

Inter-file Linkage  Researcher wishes to link data with 50 subjects with information from police records  Subject provides data and alias to researcher  Subject provides the police with his name and alias  Police provide requested information with alias  Researcher does the analysis

Statistical Strategies  Insert random error into dataset that still allows useful statistical analysis  Person roles a die to determine the answer For example someone asks an individual if they have used drugs in the past month. The individual roles a die and a corresponding number elicits a yes or no response For example someone asks an individual if they have used drugs in the past month. The individual roles a die and a corresponding number elicits a yes or no response

Top-Coded  dataset is one for which the upper bound is not known.  This is often done to preserve the anonymity of people participating in the survey if a survey included a person with wealth of $51 billion, it would not be anonymous because people would know it is Bill Gates if a survey included a person with wealth of $51 billion, it would not be anonymous because people would know it is Bill Gates

Restricted Public Use Data  Includes individually identifiable information that is confidential and protected by law  agreement spell out the conditions of use pertaining to respondent confidentiality, as well as measures required for the physical safekeeping of the restricted datasets when in the researcher's possession

Restricted Access and Enclaves  These restricted data have confidentiality issues for which there is heightened sensitivity to disclosure, as indicated either by the depositor or the holder  A researcher applies for access to these data, and if approved, conducts the analysis under very controlled conditions. Analytic output and notes taken during the research process are reviewed by archive staff before being released to the researcher 

Ethical Editing of Qualitative Data  Assume identity and location will be discovered  Is language descriptive or judgmental?  Describe cultural context and then specific characteristics  Negative stereotypes may affect similar people  Is the research site usable again?  Have some subjects from your study site read information for accuracy.

Data Brokering  Data is held and managed by others Negotiate exchange agreements Negotiate exchange agreements Provide information about data resource Provide information about data resource Enable access Enable access

What Lies Ahead?  Electronic data storage  Using web-medias to conduct face-to-face interviews  Technology privacy activists