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Data Documentation and Informed Consent in Research
Abstract
This chapter examines data documentation and informed consent in research. The exercise of documenting data provides an opportunity for researchers to reflect on a study to guide current work and inform and enhance future research. The chapter explains data documentation, how data is created or digitized, what data mean, what their content and structure are and any data manipulations that may have taken place, specific steps for documenting data-based research beginning with the study design and ending with data analysis and guidelines for obtaining informed consent, developing culturally appropriate methods of sharing information for research purpose and discusses prevailing views on current controversies, ambiguities and problems with these guidelines and suggests potential solutions. The literature also includes many references to the need for data documentation and informed consent. Further research is needed to examine the validity and user friendliness of innovations in information sharing procedures for obtaining consent in different cultural settings.
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