7. Introduction to Privacy

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Why Does Data Privacy Matter?

Privacy is seen as a basic human right in many nations, and data protection regulations exist to safeguard that right. Individuals must know that their personal data will be treated with care before participating in research studies. Data protection procedures are used by academic institutions to demonstrate to participants that they can be trusted with their personal information (Importance of Data Privacy and Security in Trials, 2021; What is data privacy?, n.d.).

Why Should I Secure Research Participant Data? 

Concern for welfare is one of the guiding principles of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, 2nd edition (TCPS2) (Government of Canada, 2016). Personal information privacy and control, as well as the management of human biological materials in accordance with the wishes of the individual from whom the information or materials were obtained, are all variables that contribute to welfare. Researchers must have procedures in place to protect identifiable and/or confidential data obtained or collected during participation in a research study or for use in a research study.  

Important to Note:

Identifiable Information is information that alone or in combination with other available information, could reasonably be expected to identify an individual. Examples include the address, telephone number, fingerprints or blood type of a research participant (Human Research Guidelines and Policies, 2013).