Acquisition and Use of Data

Privacy. This refers to participants’ interest in controlling the access of others to themselves. The need to establish boundaries is manifested differently depending on learning, culture and developmental factors. Theory coupled with empirical study can elucidate how persons in various cultures, contexts and stations in life define and orchestrate their privacy, and best ways to understand and respect the privacy of research subjects.

(Note: Privacy is about persons and Confidentiality is about data.)

Confidentiality. This refers to limiting access to identifiable data. Under what conditions of confidentiality are research participants willing to divulge information? How can researchers meet the conditions of confidentiality that they promise? What are effective ways to reduce threats to confidentiality?

Uses of data. This includes issues of obligation to publish, data sharing and dissemination. How is research effectively disseminated? What should be emphasized or omitted? How are data used? Who is harmed or benefited? Should harmful data be suppressed or censored; what happens when it is? What are consequences of the various modes of dissemination? How can risks of data sharing be minimized and benefits maximized?

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